“I am sick, but that’s not all that I am”: patient perspectives on psychological adaptation to inborn errors of immunity

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Beers, Hannah R. Davidson, Katie L. Lewis, Michael R. Setzer, and 2 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-5145738/v1 This work is licensed under a CC BY 4.0 License Status: Published Journal Publication published 06 Jan, 2025 Read the published version in Journal of Community Genetics → Version 1 posted 7 You are reading this latest preprint version Abstract Inborn errors of immunity (IEI) are rare heritable disorders of the immune system predisposing to atypical infections, autoimmunity, inflammation, and risk of malignancy. Adaptation is the process of incorporating stressful experiences into one’s life; these experiences may include onset of illness, receiving a diagnosis, or suffering without a diagnosis. Poor adaptation is linked to adverse outcomes including psychiatric comorbidities and decreased well-being. Most people with chronic illnesses and rare diseases adapt to their condition with time, but little is known about how this happens. We seek to address this gap in knowledge by investigating features of successful adaptation to IEI over time to help providers facilitate this process among those who struggle. We interviewed 20 self-reportedly well-adapted adults with IEI about their experiences of adaptation. We identified three overarching themes. First, many participants grappled with shame and loss but ultimately integrated their illness into their lives through acceptance, gratitude, and self-compassion. Second, knowledge and choice contributed to participants’ perceived control, but most participants were also forced to acknowledge the limits of that control when confronting unpredictable symptoms. Finally, social relationships could influence adaptation either positively or negatively. Notably, many participants found meaning in giving back to their communities, especially by educating others about their condition. Ultimately, participants showed that adaptation to life with IEI is complex and ongoing, requiring frequent recalibration to emerging challenges in new life stages. We provide recommendations to providers to help the results of this study shape their discussions with patients. adaptation adjustment immunodeficiency rare chronic qualitative Figures Figure 1 Introduction Psychological adaptation is the mental and emotional processes through which individuals adjust to and manage the impact of stressful life events. Such events can include receiving a clinical diagnosis, receiving a genetic explanation for clinical illness, or facing ongoing symptoms in the absence of a clearly defined diagnosis (Taylor 1983; Setzer et al. 2023). Like many other rare, chronic, and often life-disrupting conditions, living with an inborn error of immunity (IEI) requires adjusting to new limitations and routines while coping with significant uncertainty. IEIs include nearly 500 distinct heritable disorders manifesting with atypical infections, autoimmunity, inflammation, and risk of malignancy. Severity varies widely even within families but affected individuals can face multiple hospitalizations and lifelong treatments. Even between acute infections, symptoms can fluctuate from day to day. Many IEI patients experience extended diagnostic delay, which can detrimentally impact treatment and leave patients without a clear path forward (Anderson et al. 2022; Bahrami et al. 2020; Branch et al. 2021; Immune Deficiency Foundation 2023; Slade et al. 2018; Urschel et al. 2009). Even with comprehensive genomic evaluation, yield of genetic testing is around 30-40%, leaving most patients with clinically suspected IEI without a molecular diagnosis (Similuk et al. 2022; Vorsteveld, Hoischen, and van der Made 2021). Patients face difficult decisions around management, transplant, and family planning, often with limited prognostic information. Theoretical frameworks conceptualize how individuals make sense of threatening experiences, offering structured insights into the underlying processes. Shelley Taylor’s theory of psychological adaptation, based on interviews with breast cancer survivors, organizes adaptation into three tasks: (1) reestablishing self-esteem after the damage caused by the event; (2) finding meaning in the experience, often by seeking causal attributions; and (3) regaining mastery over one’s life in the wake of the event (Taylor 1983). Steven Lepore’s social-cognitive processing model further suggests the process of adaptation is moderated by others’ responses to sharing one’s experiences. “Supportive, receptive, or noncritical” responses facilitate adaptation; “unsupportive, unreceptive, or critical” responses can be barriers to it (Lepore 2001). Importantly, poor adaptation is correlated with a number of adverse outcomes, including anxiety, depression, caregiver overload, and decreased well-being (Rodríguez et al. 2024; Tao et al. 2023; Heyink 1993; B. B. Biesecker et al. 2013). Studies of adaptation reflect that the process of adaptation varies widely among individuals. The patients who struggle most to adjust may benefit from additional interventions (B. Biesecker and Erby 2008). One recent survey study found that perceived control is significantly associated with psychological adaptation in participants with IEI, with and without genetic diagnoses (Setzer et al. 2023). Other studies have found decreased quality of life (Barlogis et al. 2017; Battersby et al. 2019; Nicholson et al. 2022; Titman et al. 2014) and increased psychiatric comorbidities (Manusama et al. 2022; Kayan Ocakoglu et al. 2018) among patients with IEIs, but there is only limited research on how people with IEI adapt to life with a rare, chronic, unpredictable illness (Similuk et al. 2016; Peshko et al. 2019). We aim to address this knowledge gap by investigating features of successful adaptation to IEI over time and providing new insights that will equip providers to identify and help those who struggle. Methods Participants were recruited from the National Institute of Allergy and Infectious Diseases (NIAID) Centralized Sequencing Program (CSP) and participated in a prior survey study. In brief, the survey study recruited adults with IEI from 2017 to 2021 and included questions covering constructs including perceived control, mental health, and adaptation. To be eligible for the present interview study, participants must have been 18 – 40 years old, reported above-average adaptation compared to other survey participants on the Psychological Adaptation Scale (PAS), and indicated scores consistent with at least mild anxiety and/or depression on the PROMIS 29 Profile v2.1 (B. B. Biesecker et al. 2013; Choi et al. 2014; Schalet et al. 2014). Eligible participants (n = 35) were contacted up to three times via email. The semi-structured interview guide included questions about the process of adaptation over time, as well as meaning making and mastery (Online Resource 1). Two researchers performed interviews remotely from June through October 2022. Interviews were recorded and transcribed. Identifying information was removed. The primary coder (BJB) and a supervisor (KLL) reviewed and independently coded three transcripts before developing a codebook. The primary coder then coded all transcripts and met with the supervisor to discuss questions and challenging passages. Coded data were analyzed using an inductive, semantic thematic approach (Braun and Clarke 2006). Inductive approaches generate codebooks and themes from interview data rather than an external framework; semantic analysis focuses on participants’ explicit descriptions of their experiences rather than implicit concepts. Findings were summarized and sent to participants for feedback by email and phone. Written informed consent was obtained for all participants and the study was approved by the National Institutes of Health (NIH) Institutional Review Board (NCT03206099). Positionality This project and its analysis was executed by all members of the authorship team, the majority of whom are female and one of whom is male. Several members of the authorship team work as, or were in training to be, genetic counselors at the time of data collection and/or writing this paper. Three of these genetic counselors had/have close working experiences within the IEI community through the existing protocol, which included previously consenting several of the participants to genome sequencing. Results Participant characteristics Overall, 20/35 participants (57%) agreed to participate. Median interview length was 55 minutes (range: 32 - 98 minutes). By self-report, the interview cohort was predominantly white (17/20, 85%), non-Hispanic (14/20, 70%), female (13/20, 65%), and had been living with IEI for over ten years prior to the initial survey (14/20, 70%). The most common self-reported diagnoses were common variable immune deficiency (5/20, 20%) and GATA2 deficiency (5/20, 20%). Seven participants (35%) had undergone hematopoietic stem cell transplant (HCST) prior to the interview. Participant characteristics are described in Table 1. Thematic analysis Through inductive, semantic thematic analysis, we identified three major themes: rewriting narratives, navigating disruptions, and renegotiating community. Theme 1: Rewriting narratives Subtheme 1: from resistance to acceptance Participants initially resisted their illness before gradually accepting it, as summarized in Table 2. Participants connected the concept of resistance to focusing on where they felt they “should” be, driven by comparison to others or internalized shame. Four participants (20%) explicitly used the word “shame” to characterize their relationship with their illness; many more implicitly described experiencing it. Notably, shame sprung from a variety of underlying causes and contributed to self-reinforcing behaviors, as shown in Table 3. If resistance was characterized by (unsuccessful) attempts to ignore physical and emotional needs, acceptance meant acknowledging the reality of illness without being crushed by the weight of that reality. Some overcame shame through self-compassion, which enabled them to open up about their experiences to others, reframe their responsibility for their illness, and forgive themselves for their own limitations: “not being hard on yourself if you feel like you can’t do something” (40 F, S5228470). For instance, one participant situated her illness in the context of shared human struggles, which helped her feel less ashamed of her particular burden: “There’s no reason as to why things happen to certain people and not to others, so there's no point in thinking my life should be different. … This is my thing, the mountain I'm climbing, and everyone has their own.” –39 F, S2644543 As a result, she said, she developed greater “self-awareness and humility and acceptance,” seeing herself as “both completely insignificant and of incalculable significance.” She continued, “I get to decide how I’m going to respond to the things that have happened to me” (39 F, S2644543). For this participant, living with IEI created an opportunity to assert control over her emotional world even in uncontrollable circumstances. Similarly, another participant said the unpredictable nature of chronic illness presented her with a choice of focusing on healthy days or hard ones: “When you have chronic illness, you don’t take moments for granted as much because some days are really good and some days are really bad. So you learn to capitalize on the good days and to appreciate the good days, and also just not get rattled as much by little things that don’t matter.” –28 F, S6531719 Choosing to be grateful for the good days helped this participant move through the bad ones. She also shared that practicing her religion helped cultivate this perspective. Other participants likewise cited behaviors that fostered gratitude, including meditating, writing, going outdoors, listening to music, pursuing hobbies, and seeking therapy. As a result, several participants grew through coping with their illness. For instance, one participant identified her increased ability to live in the moment: “Realizing that I wasn't going to go back to being the old [me]…Actually, I feel like I'm happier overall now, even though I have all this anxiety and depression. ... I can just stare at a leaf and be like, ‘Wow, look at that leaf,’ and find the beauty in it, where before I had to always be moving. So I think finding the beauty in the little things, and I feel like I've grasped a part of, like, the meaning of life, more than I did before.” –38 F, S9033160 For her, like many participants, acceptance involved both acknowledging the ongoing reality of her illness and embracing the person she became as a result of her illness. Subtheme 2: from defining to integrating Many participants grappled with and ultimately rejected the concept of illness as identity. They said “[My illness is] something that I deal with every day, but it’s not who I am” (28 F, S6531719) and emphasized that they were “not letting my condition or disease state control my life” (39 F, S6509727). In fact, defining oneself apart from IEI was closely tied to empowerment: “Nothing’s going to stop me. I might be sick, and I might get admitted to the hospital every now and again. Yeah, I've had a lot of surgeries and those surgeries have left scars. ... But at the end of the day, that's not all of who I am. I can be so much more than the person that was just a victim to an illness.” – 23 M, S3173363 For this participant, a narrative which solely focused on his medical odyssey would not be a complete representation of his story. Instead, participants said, they had to learn how to integrate their illness into their lives without letting it define their identity. This is an especially challenging feat in IEI, which often involves recurrent infections, frequent hospital visits, and daily risk management.To that end, some were initially overwhelmed by medical trauma and struggled to restart their lives as their symptoms stabilized; others were so resistant to being labeled chronically ill that they tried to compartmentalize their illness and carry on as “normal.” Ultimately, to adapt, both groups had to learn to incorporate their illness into their lives—frequent doctor’s visits, lifestyle alterations, emotional support—without being consumed by it. As one participant said, “Yes, I am sick. … but that’s not all that I am. … That’s a part of my life, but it’s not my entire life. So I can make a life beyond a hospital bed” (23 M, S3173363). Subtheme 3: an ongoing process Even among a cohort of relatively well-adapted participants, several explicitly stated that they are still undergoing a continual process of adaptation. One participant described her illness this way: “It’s like your whole entire life’s been hit by a train – and it just keeps coming back. It doesn’t keep rolling down the tracks. It just keeps making circles and knocking you off your feet” (27 F, S8556521). When participants reflected back on their illness experiences, they identified discrete challenges that emerged in various life stages: elementary school worries were different from adolescent insecurities; dating difficulties in young adulthood were distinct to grieving infertility secondary to transplant. While some coping skills were transferable, new challenges also required novel approaches to adaptation. As one participant said, “That process [of accepting one’s illness] is very messy and circuitous and it’s like one step forward, two steps back, feeling around in the dark… And it’s still happening” (39 F, S2644543). Crucially, the ongoing, dynamic nature of the adaptation process highlights the role of not only time, but effort, context, and support. Theme 2: Navigating disruptions Subtheme 1: control what you can and accept what you can’t Nearly every participant sought to control what they could about their illness and their lives. However, given the unpredictable and chronic nature of IEI, participants had to accept what was outside their control. This delicate balance extended beyond the medical domain to touch on participants’ personal lives and social circles (Table 4). Participants associated increased control with increased knowledge. Seeking out new information helped participants optimize disease management, feel confident communicating with providers, and diminish anxiety driven by uncertainty. Furthermore, over time, participants increasingly relied on experiential knowledge; they learned to “listen to my body” (39 F, S6509727), pay attention to the body’s “signals” (25 F, S6561773), and become “a pro at my own body” (37 F, S4328287). They leveraged this skill not only for their own self-monitoring, but also for self-advocacy with peers and providers who were unfamiliar with IEI or dismissive of their symptoms. Additionally, participants associated increased control with increased agency. For instance, many participants vigilantly limited exposure to infectious triggers; however, some also said that making deliberate choices about what risks were worth taking enhanced their control. As one participant said, “There's some risks you have to take and some risks you have to avoid…It's a matter of preventing the germs and still living my life, rather than letting the prevention of germs rule my life” (23 M, S3173363). Several participants maintained control by managing their stress levels through therapy, self-care, and modified relational boundaries. However, some struggled to manage the anxiety of trying to control so many aspects of their illness: “You have to constantly be monitoring … Then at a certain point, you’re also kind of thinking, ‘Am I just being overly paranoid? Am I overthinking this? Am I just letting my disease take something that wouldn’t be that big of an issue, but because I have my disease, I’m making it a bigger issue than what it actually is?’ I constantly felt that way. You feel kind of ridiculous when you’re reporting a 99.5-degree fever to a doctor. … It’s kind of like a weird balancing act between those two types of thinking. Trying to be on top of it, so that way you don’t wind up in the hospital or to cut something off before it gets worse, to, ‘Am I just overthinking this?’” – 36 M, S6310326 For this participant, the serious risks associated with common infections made walking the line between appropriate monitoring and hypervigilance feel nearly impossible. Even when symptoms were relatively well-controlled, participants were hesitant to trust they would stay that way. As one participant said: “If it works, it works – but, I mean, will it work forever?” (35 M, S1920177). Thus, participants were also forced to face the limits of what could be reasonably controlled. For some, this was an ongoing struggle; for others, surrendering the need for control was ultimately liberating. One participant said: “Each new age, season, that I've entered, I just become more aware of the impact that these illnesses have on my body and on my everyday life. … That's probably where a lot of the anxiety's been coming from, was realizing that lack of control. But at the same time, realizing that because I have such little control, I don't need to carry all of that worry, because it's not helping.” –28 F, S6531719 For her, recognizing the impossibility of controlling every risk meant freedom from constantly striving to do so. While she continued to proactively manage her illness, she released herself from blame for every infection and flare-up. Subtheme 2: empowerment through overcoming For many participants, the greatest burden of IEI was its interruptive impact on their daily lives. They described themselves as “stuck” (37 F, S4328287, 39 F, S0583046), on “pause” (25 F, S6632797), or “hindered from making progress” in life (27 F, S7235706). Often, they used comparative language to contrast their experiences with their healthy peers or their own anticipated narrative for their lives. “I felt initially very cheated. I was supposed to go to law school. I was going to do the Peace Corps. I had all these plans and things just didn't work out that way for me and I watched my peers moving forward in their careers. … I sort of felt like my life was supposed to be different and it's kind of hard to reconcile myself to the fact that this was the way things are.” –39 F, S2644543 As this participant described, the onset of IEI often redirected entire life trajectories. Some participants chose where to live as adults based on access to care. Participants highlighted extra considerations around dating, sex, pregnancy, parenting, travel, beauty, work, school, sports, shopping, and social dynamics. As one said, “I was aware very early on that I wasn’t the same. ... It was very evident that they didn’t have to worry about the same things that I did” (36 M, S6310326). She expressed that living with IEI requires living intentionally across many dimensions that others might not give a second thought; this sometimes fostered anxiety and other times cultivated determination. While IEI often caused permanent life redirection, participants adapted by finding new ways to meet their goals, such as shifting to remote work, or by setting new goals entirely, such as pursuing a new career in advocacy. The determination to overcome barriers was a source of empowerment and self-esteem for these participants. “Everything that's happened to me has made me who I am and made me this goal-driven, determined person, regardless of anything that goes on. … I can do anything I want with this determination and with the amount of fight, if you will, that these experiences have given to me. I've almost died countless times. I've been on gurneys and tubes hooked up and everything like that. No amount of anxiety at work or no amount of failing a test is ever going to put me back in that situation – so there's nothing that I can't get past.” – 23 M, S3173363 This participant expressed that his experiences with IEI had altered his life trajectory from what he had expected, but he was proud of the person he had become through that journey. Theme 3: Renegotiating community Subtheme 1: unhelpful relationships fail to empathize Participants shared that their illness and their relationships impacted each other reciprocally: their illness reshaped their relationships, and their relationships influenced their experience of their illness. While living with IEI deepened some relationships, many participants also recounted moments of isolation. As one participant said: “You feel so alone, so isolated. Nobody is really going to understand unless they have lived it. I think it was over two years before I actually met another patient, and it was another year before I met a patient that had the same exact diagnosis as me. That feeling of isolation and aloneness really can take a toll on a patient’s psyche, emotionally, mentally, spiritually, physically, all of it. It all encompasses all those things.” –39 F, S6509727 Like many participants, she grounded her experience of isolation in others’ lack of understanding her experience. Participants described five main ways they felt estranged by others’ lack of understanding, which made them feel either invisible or hyper-visible (Figure 1). First, participants were hurt by loved ones who refused to accept their illness. These ranged from formal relationships with providers who chose to treat symptoms rather than look for an underlying cause to peers and family members who accused participants of being mistaken, dramatic, or deceitful. Notably, minimizing symptoms and encouraging risk behaviors were the most common reasons participants cited for setting boundaries or ending certain relationships. Second, participants expressed the burden of having to constantly explain their symptoms, correct misconceptions, or justify their choices. Third, participants felt they had to manage others’ emotions in addition to their own, since many people didn’t know how to react to their illness. Fourth, participants struggled with others’ pity or worry. For some, already concerned about burdening others with the demands of their illness, worry reinforced shame. Others felt patronized, victimized, or singled out. Finally, participants described painful experiences of stigma and embarrassment. For many, self-consciousness was particularly acute during adolescence, but for some, it persisted into adulthood, often depending on the visibility of their symptoms. Participants’ illness, often onset early in life, created a gap between their experiences and their peers’ expectations. Friends and family members who failed to bridge that gap contributed to participants’ negative views of themselves and their illness. Some participants crossed that divide through clear communication about their needs, both physical and emotional, but their ability to do so was dependent on the willingness of the other party to engage in that process. As a result, some relationships were ultimately deemed beyond repair. Subtheme 2: helpful relationships validate and adjust By contrast, participants felt supported by family members and friends who validated their experiences, adjusted to their needs, and reframed their perspective. First, when loved ones listened to participants’ accounts of their illness, participants felt supported. Since IEI can be an invisible illness, simply being believed was a crucially validating experience for many participants, especially in contrast to skepticism from others. Second, participants appreciated those who acknowledged and adapted to their needs, both physical and emotional. For instance, participants said loved ones drove when they were unable, sent cards or text messages to the hospital, and maintained their friendship despite altered rhythms and abilities. As one participant said: “[My illness] is not something I talk about regularly, so I didn’t even think that they would put two and two together and remember [when the pandemic hit]. So that was kind of nice and heartwarming, that friends and cousins and stuff were like, ‘Hey, what do you need? We can get it if you can’t go out or don’t want to go out.’” –27 F, S8556521 Finally, participants valued those who helped them reframe their view of their illness and themselves. Participants often quoted specific conversations that reshaped their perspective: “The person that I am inside – that will always be the same person” (39 F, S0583046); “Nobody was mad at me for not telling them; all they wanted was for me to be happy and healthy” (37 F, S4328287); “You have a chronic illness, but you also have a life to live” (24 F, S9633781). One participant specifically cited her healthcare provider: “My immunologist, this past year, she kind of said, ‘So what are you doing?’ That’s when I kind of like had a moment of, ‘I actually can do things with the chronic illness.’ Even though I have a central line and stuff and I have to be hooked up to a bookbag and everybody else doesn’t, I can still go to class.” –39 F, S0583046 For her, the onset of IEI was so life-shattering that she had to rebuild her identity and understanding of her abilities in the wake of recovery; outside encouragement was an essential catalyst in that process. Another participant similarly highlighted the impact from seeming providers’ seemingly small interventions: “I've been in a few scenarios where a doctor recognized that I was struggling mentally ... The times when they just took a moment and they were like, ‘I can see that you're really stressed out about this’ – even if I started crying when they said that, I felt better 30 seconds later … For the most part, adults will pull themselves together. It's just that 30 seconds to a minute of being able to let a little bit of it out in the presence of someone who you feel cares about you, at least temporarily. That would go a long way.” –39 F, S2644543 When appointments were overwhelming, having the opportunity to voice her anxiety to her provider helped alleviate her distress. Overall, most participants experienced both helpful and unhelpful relationships; the biggest difference between them was the extent to which loved ones were willing to engage participants around their illness experience rather than either defining them by it or ignoring it altogether. Notably, supportive relationships were marked not necessarily by complete understanding, but simply by validation and encouragement. Subtheme 3: opportunities to give back are meaningful Importantly, participants also valued opportunities to invest in others. Given the rarity of IEI, many participants found meaning in contributing to research and taking on advocacy roles, either formally or informally. Participation in research was understood by participants as a way to benefit others in the future, so that “someone doesn’t have to go what I went through, years and years of pain and ups and downs” (40 F, S5228470). Participants’ advocacy activities included providing resources to other patients, educating physicians and fellow patients, volunteering, fundraising, and even changing careers. Communicating their experiences to others was especially meaningful; participants who wrote or spoke in public described it as “cathar[tic]” (25 F, S6561773) and “therapeutic” (37 F, S4328287) in addition to the benefits of educating others. These activities required time and energy, yet participants said focusing on others gave them a sense of purpose. For example, one said, “If I worry less about myself and more about others, I find that that’s super helpful. It’s really hard to do when you’re not feeling well. …To stay out of your own head and help you stay focused, [helping other people] has been really helpful” (30 M, S0500585). Genetic diagnosis provided validation and relieved guilt for some, but most participants found meaning apart from causal explanations for their illness. Several participants found more relief in the idea that “there’s just kind of no rhyme or reason to it” (40 F, S5228470) than that “this has to have happened for a reason” (24 F, S9633781). Instead, they emphasized the value of leveraging their experiences to help others, restoring a sense of worth in the wake of their illness. Discussion This study is the first to our knowledge to qualitatively explore psychological adaptation to IEI. Participants had to re-evaluate their relationship 1) with themselves, grappling with shame and loss through acceptance and integration; 2) with their circumstances, wrestling for control over fundamentally uncontrollable outcomes; and 3) with others, renegotiating their social ecosystem in the context of new needs. However, the reality is more complex: all three of these relationships overlap and entangle with each other. Ultimately, participants showed that adaptation to life with IEI is multifaceted, ongoing, and possible. In many ways, adaptation to IEI required navigating apparent paradoxes. Participants held onto identities beyond their illness even as they allowed themselves to be changed by it. They felt comforted by the shared experience of human illness while feeling isolated by their unique expression of it. They mourned the loss of their expected trajectories while adjusting to new goals. They had to invest significant energy toward controlling their symptoms while simultaneously accepting that those efforts were no guarantee of security. They found peace in allowing themselves to rest and rely on others while being empowered by overcoming obstacles with determined persistence. They balanced their unique experiential knowledge with a need for support and validation from others. They emphasized making meaning in their illness rather than of it. If the process of adaptation involves finding a livable balancing point along each of these spectra, every change in illness manifestations or life circumstances adds new weight to either end, forcing recalibration to a new equilibrium. As participants lived with their illness over the course of many years, they constantly readjusted to new challenges. As others have identified, adaptation is an iterative process that continues throughout the lifespan, with many ups and downs (Ambrosio et al. 2015). However, while adaptation has no arrival, progress is still possible. Despite the emergence of new challenges, all participants described psychological adaptation and personal growth over the years since their diagnosis. Implications for theory These data add nuance to existing theories of adaptation, highlighting distinctives of rare and chronic disease communities. In accordance with Taylor’s theory (Taylor 1983), our participants affirmed that meaning making and mastery were core concepts. However, participants experienced meaning largely through personal growth and helping others, rather than identifying a causal attribution for their illness. Participants also emphasized that asserting control was balanced by accepting a lack of control, a novel addition to prior frameworks (Setzer et al. 2023; Taylor 1983; Ambrosio et al. 2015). In contrast to Taylor’s participants who compared themselves to cancer patients worse off than themselves, our participants tended to compare themselves to their healthy peers. This distinction may be one area where the divide between rare and common disease becomes relevant. Finally, participants shared that support was largely experienced through validation as predicted by the social-cognitive processing model (Lepore 2001). Future research should explore practice implications of these differences across groups and explore the overlap of these factors in other rare and chronic disease communities. Implications for practice The psychological burden of illness can be as complex and debilitating as the physical burden. Our participants suggested that providers can facilitate psychological adaptation in three key ways: 1) asking, 2) suggesting, and 3) helping. First, simply asking about a person’s coping can itself facilitate coping. Questions can prompt patients to process emotions, identify opportunities for change, and reflect on their own strengths. Medical providers may ask one or two broad but intentional questions, like “How have you been coping with all of this?” or offer a simple reflection, like “I know this process has been really hard on you.” Providers specifically focused on facilitating adaptation, such as genetic counselors and therapists, may draw on the questions proposed in Box 1 for longer conversations, as well as established therapeutic interventions to facilitate meaning making, enhance perceived control, and identify sources of support (B. Biesecker and Erby 2008; Helm 2015). Second, after listening to a patient’s experience, providers may suggest alternate perspectives, drawing on principles of narrative therapy and strengths-based interventions (MacLeod, Metcalfe, and Ferrer‐Duch 2021; Padesky and Mooney 2012; Dane et al. 2024). This does not mean finding a “silver lining” or “looking on the bright side.” Rather, this means reminding patients that they are more than their illness. For instance, providers may be able to reframe a despairing narrative to identify a patient’s strengths amid their challenging circumstances: “I can see that this has taken a heavy toll on you, and continuing to engage in care while you pursue your goals really shows your resilience and determination.” Third, while adaptation is not a problem to be solved but a process to engage with, providers can offer practical help. For instance, rather than merely recommending therapy, clinicians can provide specific referrals. Doctors can enhance control by explaining concepts in patient-friendly language. Providers can offer opportunities for meaning and connection by referring patients to advocacy groups. Ideally, these interventions would be tailored to a patient’s specific needs and struggles. Limitations Overall, this study is a novel exploration of the process of adaptation to IEI over the life course.However, these findings should be considered in the context of several limitations. First, there is possible selection bias as all participants voluntarily engaged in a relatively lengthy interview. Although our interviews achieved saturation, it is possible that non-participants may have unique approaches to adaptation. Additionally, the eligible population was drawn from a larger NIH research protocol which may not be representative of all cases of IEI; it is possible this group is enriched for more complex or undiagnosed cases. Finally, the racial and ethnic background of our cohort is over-representative of white, non-Hispanic participants as compared to the broader United States population. Conclusion and future directions Adaptation is a constantly evolving process that requires repeatedly confronting both practical and existential questions. In alignment with prior studies, meaning, control, and support were key to this process (Taylor 1983; B. Biesecker and Erby 2008; Similuk et al. 2016; Lepore 2001); this work added nuance to all three concepts through eliciting psychological narratives of integrating illness into life, accepting lack of control, and making meaning beyond causal attributions. Further research is needed to understand the strength and direction of relationships among the various factors contributing to adaptation, specific needs of patients across the life course, and optimal interventions to address those needs. Declarations Funding This research was funded by the Division of Intramural Research, National Institute of Allergy and Infectious Diseases. Conflict of interest The authors declare no conflicts of interest. The opinions and assertions expressed herein are those of the author(s) and do not necessarily reflect the official policy or position of the Uniformed Services University, the Department of Defense, or the Department of Health and Human Services. Compliance with ethics guidelines All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000. Informed consent was obtained from all patients for being included in the study. Data availability The interview data generated for this study are not publicly available in order to maintain participant confidentiality. However, de-identified excerpts may be requested for review by contacting the corresponding author. References Ambrosio, Leire, Juana Maria Senosiain García, Mario Riverol Fernández, Sagrario Anaut Bravo, Sara Díaz De Cerio Ayesa, María Eugenia Ursúa Sesma, Neus Caparrós, and Mari Carmen Portillo. 2015. “Living with Chronic Illness in Adults: A Concept Analysis.” Journal of Clinical Nursing 24 (17–18): 2357–67. https://doi.org/10.1111/jocn.12827. 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Drexhage, and Virgil A. S. H. Dalm. 2022. “Psychological Symptoms in Primary Immunodeficiencies: A Common Comorbidity?” Journal of Clinical Immunology 42 (3): 695–98. https://doi.org/10.1007/s10875-022-01207-7. Nicholson, Bethany, Rupert Goodman, James Day, Austen Worth, Ben Carpenter, Kit Sandford, Emma C. Morris, et al. 2022. “Quality of Life and Social and Psychological Outcomes in Adulthood Following Allogeneic HSCT in Childhood for Inborn Errors of Immunity.” Journal of Clinical Immunology 42 (7): 1451–60. https://doi.org/10.1007/s10875-022-01286-6. Padesky, Christine A., and Kathleen A. Mooney. 2012. “Strengths-Based Cognitive–Behavioural Therapy: A Four-Step Model to Build Resilience.” Clinical Psychology & Psychotherapy 19 (4): 283–90. https://doi.org/10.1002/cpp.1795. Peshko, Dmitrii, Ekaterina Kulbachinskaya, Ilya Korsunskiy, Elena Kondrikova, Federica Pulvirenti, Isabella Quinti, Oleg Blyuss, Audrey Dunn Galvin, and Daniel Munblit. 2019. “Health-Related Quality of Life in Children and Adults with Primary Immunodeficiencies: A Systematic Review and Meta-Analysis.” The Journal of Allergy and Clinical Immunology: In Practice 7 (6): 1929-1957.e5. https://doi.org/10.1016/j.jaip.2019.02.013. Rodríguez, A. A., M. García, Oscar Martínez, J. F. López-Paz, I. García, P. Pérez-Nuñez, and I. Amayra. 2024. “Predictors of Overload in Parents of Children with Neuromuscular Diseases.” Frontiers in Neurology 15 (February):1349501. https://doi.org/10.3389/fneur.2024.1349501. Schalet, Benjamin D., Karon F. Cook, Seung W. Choi, and David Cella. 2014. “Establishing a Common Metric for Self-Reported Anxiety: Linking the MASQ, PANAS, and GAD-7 to PROMIS Anxiety.” Journal of Anxiety Disorders 28 (1): 88–96. https://doi.org/10.1016/j.janxdis.2013.11.006. Setzer, Michael, Jia Yan, Lori Erby, and Morgan Similuk. 2023. “Perceived Control Is Significantly Associated with Psychological Adaptation in Individuals with Known or Suspected Inborn Errors of Immunity.” Journal of Community Genetics 14 (6): 639–47. https://doi.org/10.1007/s12687-023-00670-y. Similuk, Morgan N., Angela Wang, Michael J. Lenardo, and Lori H. Erby. 2016. “Life with a Primary Immune Deficiency: A Systematic Synthesis of the Literature and Proposed Research Agenda.” Journal of Clinical Immunology 36 (2): 123–33. https://doi.org/10.1007/s10875-016-0241-1. Similuk, Morgan N., Jia Yan, Rajarshi Ghosh, Andrew J. Oler, Luis M. Franco, Michael Setzer, Michael Kamen, et al. 2022. “Clinical Exome Sequencing of 1000 Families with Complex Immune Phenotypes: Towards Comprehensive Genomic Evaluations.” The Journal of Allergy and Clinical Immunology , June, S0091-6749(22)00839-9. https://doi.org/10.1016/j.jaci.2022.06.009. Slade, Charlotte A., Julian J. Bosco, Tran Binh Giang, Elizabeth Kruse, Robert G. Stirling, Paul U. Cameron, Fiona Hore-Lacy, et al. 2018. “Delayed Diagnosis and Complications of Predominantly Antibody Deficiencies in a Cohort of Australian Adults.” Frontiers in Immunology 9. https://www.frontiersin.org/articles/10.3389/fimmu.2018.00694. Tao, Tiffany Junchen, Tsz Wai Li, Li Liang, Huinan Liu, and Wai Kai Hou. 2023. “Investigating the Reciprocity between Cognition and Behavior in Adaptation to Large-Scale Disasters.” NPJ Mental Health Research 2 (December):21. https://doi.org/10.1038/s44184-023-00037-8. Taylor, Shelley. 1983. “Adjustment to Threatening Events: A Theory of Cognitive Adaptation.” American Psychologist 38 (11): 1161–73. https://doi.org/10.1037/0003-066X.38.11.1161. Titman, P., Z. Allwood, C. Gilmour, C. Malcolmson, C. Duran-Persson, C. Cale, G. Davies, H. Gaspar, and A. Jones. 2014. “Quality of Life in Children with Primary Antibody Deficiency.” Journal of Clinical Immunology 34 (7): 844–52. https://doi.org/10.1007/s10875-014-0072-x. Urschel, Simon, Lale Kayikci, Uwe Wintergerst, Gundula Notheis, Annette Jansson, and Bernd H. Belohradsky. 2009. “Common Variable Immunodeficiency Disorders in Children: Delayed Diagnosis Despite Typical Clinical Presentation.” The Journal of Pediatrics 154 (6): 888–94. https://doi.org/10.1016/j.jpeds.2008.12.020. Vorsteveld, Emil E., Alexander Hoischen, and Caspar I. van der Made. 2021. “Next-Generation Sequencing in the Field of Primary Immunodeficiencies: Current Yield, Challenges, and Future Perspectives.” Clinical Reviews in Allergy & Immunology 61 (2): 212–25. https://doi.org/10.1007/s12016-021-08838-5. Tables Table 1 Participant characteristics Attribute N % Mean St. Dev. Age Years - - 32.3 6.51 Sex Female 13 65% - - Male 7 35% - - Race Asian 1 5% - - Native Hawaiian or Pacific Islander 1 5% - - White 17 85% - - Unknown 1 5% - - Ethnicity Hispanic or Latino 5 25% - - Not Hispanic or Latino 14 70% - - Unknown 1 5% - - Self-reported diagnoses Common variable immune deficiency (CVID) 5 25% - - GATA2 deficiency 5 25% - - DOCK8-related hyper-IgE syndrome, Job’s syndrome 2 10% - - Autoimmune polyendocrinopathy-candidiasis-ectodermal dystrophy (APECED) 1 5% - - Chronic granulomatous disease (CGD) 1 5% - - Primary ciliary deficiency (PCD) 1 5% - - Other 5 25% - - HSCT Yes 7 35% - - No 13 65% - - Time since illness onset 10 years 14 70% - - Unsure 1 5% - - Adaptation PAS score - - 4.16 0.33 Anxiety PROMIS 29 Profile v2.1 - - 61.7 7.71 Depression PROMIS 29 Profile v2.1 - - 54.2 7.54 Table 2 Rewriting the narrative from resistance to acceptance RESISTANCE ACCEPTANCE ID Shame Self-compassion “I buried it in a way that I didn’t let myself feel it.” “I have other things that I’m going through than my friends, but that doesn’t make me a broken person.” 37 F, S4328287 “I did a really good job at hiding for a really long time…I was just trying to fit in.” “It feels so much better to come out and just be myself.” 37 F, S4328287 “I would push through it, but then it would make it worse for days.” “I’ve learned to rest when I feel exhausted.” 38 F, S9033160 Comparison Gratitude “If you are only busy with your illness, it will make you a depressive person.” “But if you try to live your life at a positive way, it will give your life more joy and more rest.” 39 F, S0583046 “Of course, there are days that I'm asking myself why I feel the pain, why I'm getting to all of this. Why is all of this happening?” “But then I'm going to listen to music and do meditation and look outside and think about how beautiful life is.” 39 F, S0583046 “Your thoughts, too, can make you sick.” “So think positive. ... I’m getting ready to be a new person.” 37 M, S8251256 DEFINING INTEGRATING “It’s just become such a huge part of my life.” “I need to stop letting this illness define who I am, because it’s not who I am.” 27 F, S7235706 “To be able to manage it on my own and not be defined by my health.” “Instead, to learn from it and help other people go through it as well.” 37 F, S4328287 “I might be sick and I might get admitted to the hospital every now and again. Yeah, I've had a lot of surgeries and those surgeries have left scars and they've left this and that.” “It was kind of this realization that nothing’s going to stop me. … At the end of the day, that's not all of who I am. I can be so much more than the person that was just a victim to an illness.” 23 M, S3173363 Table 3 Adaptation in the context of shame Drivers of shame Lack of agency “I almost hated myself for that, too, because I never knew what was wrong with me; I always would almost blame myself.” –25 F, S6632797 Feeling different “I just wanted so badly to fit in and look like my friends and not behind the scenes deal with this stuff that affected me, that I didn’t realize it was affecting me then emotionally.” –37 F, S4328287 Survivorship “I had met somebody in the hospital…I watched him die in the ICU.” –25 F, S6632797 Burden of care “I am dependent. I need him. Sometimes it’s shameful.” –39 F, S0583046 Heritability of disease “Sometimes I blame myself that [my daughter] has [GATA2].” –39 F, S0583046 Maladaptive responses to shame Suppress emotions “I buried it in a way that I didn’t let myself feel it.” –37 F, S4328287 Avoid discussing illness “I did a really good job at hiding for a really long time…I was just trying to fit in.” –37 F, S4328287 Resist limitations of illness “I would push through it, but then it would make it worse for days.” –38 F, S9033160 Ignore health demands “I was looking to put Band-Aids on everything physically and emotionally.” –37 F, S4328287 Adaptive responses to shame Reframe internal narrative “When I started telling myself a different story, it changed everything.” –39 F, S2644543 Acknowledge illness to others “There are certain times where … I’m not in the mood to talk, and then when I talk, I’m like, “I’m so glad I talked. I’m so glad someone listened. I’m so glad someone was there for me.”” –37 F, S4328287 Accept ongoing reality of illness “There’s nothing that’s going to change it.” –25 F, S6632797 Internalize uncaused nature of illness “It wasn’t my fault; it is what it is. People get sick and that’s just the reality of life.” –40 F, S5228470 Give oneself permission to alter lifestyle “That was something I had to teach myself, was that it’s okay to rest.” –25 F, S6561773 Table 4 Balancing control and acceptance in medical, personal, and social spheres Control what you can Accept what you can’t Medically Learn about illness “If you know more about your illness, you can live your life better. … If you don't know much about your illness, you keep struggling and keep asking, ‘Why is this happening this to me? What is happening? Why do I get all those infections?’” –39 F, S0583046 Adjust to new physical limitations “I couldn’t do normal things. ... Finding different programs or different exercises that I can do … has helped a lot. I think I found a good balance of knowing what I can and can’t do and doing what I can to make it so maybe someday I can do those things that I now can’t do.” –27 F, S7235706 Develop body awareness “Something coming on or something not feeling right, I’m very attuned to that. I think I’ve become a pro at my own body.” –37 F, S4328287 Understand the limits of non-expert providers “Even if a doctor tells me something is not true … I don’t feel … like I’m crazy, because I know my body better than a doctor could.” –25 F, S6561773 Gain fluency with healthcare system “I’ve also learned a lot of the medical terminology for my issues; that makes me feel a little bit more in control whenever I’m talking to a doctor.” –25 F, S6561773 Accept diagnostic and prognostic uncertainty “What I have still is just kind of like unknown, and I think that's what's the hardest part. … I've just accepted that whether it's got some acronym or not, it doesn't really matter.” –38 F, S9033160 Manage infectious exposures “I can control, for the most part, what germs I've been exposed to, who I'm exposed to who's sick, if I'm exposed to anyone that's sick.” –23 M, S3173363 Recognize inevitability of exposure “It’s a matter of preventing the germs and still living my life, rather than letting the prevention of germs rule my life.” –23 M, S3173363 Personally Proactively manage mental health “Diving into therapy and learning how to manage stress and all the self-care aspects for sure so I wouldn't spiral and get sick. … We need to figure out what I need to do to help myself.” –40 F, S2026162 Recognize that mental and physical health interrelate “Everybody that lives with a chronic illness that I’ve met and come across can live with bouts of anxiety and depression, myself included.” –39 F, S6509727 Cultivate predictable routines “I have rhythm to my week that helps me know when I’ll have time to rest more or sleep in, compared to times I then have to wake up early. ... I tend to do best if I have a pretty solid schedule.” –25 F, S6561773 Adjust to new normal “Everyone’s got a different normal in their life, depending what’s baseline. So accepting my baseline and … being appreciative of my baseline.” –30 M, S0500585 Build contingency plans “I try to plan everything. … Then if I randomly get stuck at a different hotel and I don't know what's right around there, then that's when I'm like, all right … I already have looked up the updated list.” –38 F, S9033160 Acknowledge unpredictable and uncontrollable future “I don’t want to think too far ahead because I don’t want to get any hopes up. I do still have a deathly fear that I will die like my mother at the age of 40. … I feel like every time I think too far ahead, I get let down.” –27 F, S8556521 Socially Prepare for conversations with others “I don’t want a pity party from anybody. I think that’s helped me master the situation. I know if somebody’s going to talk to me about it, I know exactly what I’m going to say back.” –27 F, S8556521 Rise above ignorant remarks “When somebody talks down to you after you’ve had something like this, even if it’s in a playful way like, ‘Well, you’re too young to have that. You’re too young,’ it’s hard. … I don’t have to lash out … You have to calm yourself down and know2 that they don’t know the entire situation.” –27 F, S8556521 Choose where to invest energy “I learned to just say no to most things. … Instead of my default being yes … I just switched my default to no. Then I would take a time to think about it and I would be like, "You know what? Actually, yes, I can do that." But that preserved what little energy I had.” –39 F, S2644543 Accept help from others “Not being able to drive anywhere has been really hard … I’ve made peace with my parents having to drive me places or my friends that pick me up. I’ve had to make peace without having a car or that sense of independence.” –24 F, S9633781 Box 1 Additional Declarations No competing interests reported. Supplementary Files ESM1.pdf Cite Share Download PDF Status: Published Journal Publication published 06 Jan, 2025 Read the published version in Journal of Community Genetics → Version 1 posted Editorial decision: Revision requested 05 Nov, 2024 Reviews received at journal 20 Oct, 2024 Reviewers agreed at journal 30 Sep, 2024 Reviewers invited by journal 26 Sep, 2024 Editor assigned by journal 25 Sep, 2024 Submission checks completed at journal 25 Sep, 2024 First submitted to journal 24 Sep, 2024 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. Our growing team is made up of researchers and industry professionals working together to solve the most critical problems facing scientific publishing. Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-5145738","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":374306531,"identity":"6eec8939-6336-4ace-9791-6cc6c570748e","order_by":0,"name":"Breanna J. 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Such events can include receiving a clinical diagnosis, receiving a genetic explanation for clinical illness, or facing ongoing symptoms in the absence of a \u0026nbsp;clearly defined diagnosis (Taylor 1983; Setzer et al. 2023). Like many other rare, chronic, and often life-disrupting conditions, living with an inborn error of immunity (IEI) requires adjusting to new limitations and routines while coping with significant uncertainty. IEIs include nearly 500 distinct heritable disorders manifesting with atypical infections, autoimmunity, inflammation, and risk of malignancy. Severity varies widely even within families but affected individuals can face multiple hospitalizations and lifelong treatments. Even between acute infections, symptoms can fluctuate from day to day. Many IEI patients experience extended diagnostic delay, which can detrimentally impact treatment and leave patients without a clear path forward (Anderson et al. 2022; Bahrami et al. 2020; Branch et al. 2021; Immune Deficiency Foundation 2023; Slade et al. 2018; Urschel et al. 2009). Even with comprehensive genomic evaluation, yield of genetic testing is around 30-40%, leaving most patients with clinically suspected IEI without a molecular diagnosis (Similuk et al. 2022; Vorsteveld, Hoischen, and van der Made 2021). Patients face difficult decisions around management, transplant, and family planning, often with limited prognostic information.\u003c/p\u003e\n\u003cp\u003eTheoretical frameworks conceptualize how individuals make sense of threatening experiences, offering structured insights into the underlying processes. Shelley Taylor\u0026rsquo;s theory of psychological adaptation, based on interviews with breast cancer survivors, organizes adaptation into three tasks: (1) reestablishing self-esteem after the damage caused by the event; (2) finding meaning in the experience, often by seeking causal attributions; and (3) regaining mastery over one\u0026rsquo;s life in the wake of the event (Taylor 1983). Steven Lepore\u0026rsquo;s social-cognitive processing model further suggests the process of adaptation is moderated by others\u0026rsquo; responses to sharing one\u0026rsquo;s experiences. \u0026ldquo;Supportive, receptive, or noncritical\u0026rdquo; responses facilitate adaptation; \u0026ldquo;unsupportive, unreceptive, or critical\u0026rdquo; responses can be barriers to it (Lepore 2001). Importantly, poor adaptation is correlated with a number of adverse outcomes, including anxiety, depression, caregiver overload, and decreased well-being\u0026nbsp;(Rodr\u0026iacute;guez et al. 2024; Tao et al. 2023; Heyink 1993; B. B. Biesecker et al. 2013).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eStudies of adaptation reflect that the process of adaptation varies widely among individuals. The patients who struggle most to adjust may benefit from additional interventions (B. Biesecker and Erby 2008). One recent survey study found that perceived control is significantly associated with psychological adaptation in participants with IEI, with and without genetic diagnoses (Setzer et al. 2023). Other studies have found decreased quality of life (Barlogis et al. 2017; Battersby et al. 2019; Nicholson et al. 2022; Titman et al. 2014) and increased psychiatric comorbidities (Manusama et al. 2022; Kayan Ocakoglu et al. 2018) among patients with IEIs, but there is only limited research on \u003cem\u003ehow\u003c/em\u003e people with IEI adapt to life with a rare, chronic, unpredictable illness (Similuk et al. 2016; Peshko et al. 2019). We aim to address this knowledge gap by investigating features of successful adaptation to IEI over time and providing new insights that will equip providers to identify and help those who struggle.\u0026nbsp;\u003c/p\u003e"},{"header":"Methods","content":"\u003cp\u003eParticipants were recruited from the National Institute of Allergy and Infectious Diseases (NIAID) Centralized Sequencing Program (CSP) and participated in a prior survey study. In brief, the survey study recruited adults with IEI from 2017 to 2021 and included questions covering constructs including perceived control, mental health, and adaptation. To be eligible for the present interview study, participants must have been 18 – 40 years old, reported above-average adaptation compared to other survey participants on the Psychological Adaptation Scale (PAS), and indicated scores consistent with at least mild anxiety and/or depression on the PROMIS 29 Profile v2.1 (B. B. Biesecker et al. 2013; Choi et al. 2014; Schalet et al. 2014). Eligible participants (n = 35) were contacted up to three times via email. The semi-structured interview guide included questions about the process of adaptation over time, as well as meaning making and mastery (Online Resource 1).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eTwo researchers performed interviews remotely from June through October 2022. Interviews were recorded and transcribed. Identifying information was removed. The primary coder (BJB) and a supervisor (KLL) reviewed and independently coded three transcripts before developing a codebook. The primary coder then coded all transcripts and met with the supervisor to discuss questions and challenging passages. Coded data were analyzed using an inductive, semantic thematic approach (Braun and Clarke 2006). Inductive approaches generate codebooks and themes from interview data rather than an external framework; semantic analysis focuses on participants’ explicit descriptions of their experiences rather than implicit concepts. Findings were summarized and sent to participants for feedback by email and phone.\u003c/p\u003e\n\u003cp\u003eWritten informed consent was obtained for all participants and the study was approved by the National Institutes of Health (NIH) Institutional Review Board (NCT03206099).\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003ePositionality\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis project and its analysis was executed by all members of the authorship team, the majority of whom are female and one of whom is male. Several members of the authorship team work as, or were in training to be, genetic counselors at the time of data collection and/or writing this paper. Three of these genetic counselors had/have close working experiences within the IEI community through the existing protocol, which included previously consenting several of the participants to genome sequencing.\u003c/p\u003e"},{"header":"Results","content":"\u003cp\u003e\u003cstrong\u003eParticipant characteristics\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eOverall, 20/35 participants (57%) agreed to participate. Median interview length was 55 minutes (range: 32 - 98 minutes). By self-report, the interview cohort was predominantly white (17/20, 85%), non-Hispanic (14/20, 70%), female (13/20, 65%), and had been living with IEI for over ten years prior to the initial survey (14/20, 70%). The most common self-reported diagnoses were common variable immune deficiency (5/20, 20%) and GATA2 deficiency (5/20, 20%). Seven participants (35%) had undergone hematopoietic stem cell transplant (HCST) prior to the interview. Participant characteristics are described in Table 1.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eThematic analysis\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThrough inductive, semantic thematic analysis, we identified three major themes: rewriting narratives, navigating disruptions, and renegotiating community.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTheme 1: Rewriting narratives\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cu\u003eSubtheme 1: from resistance to acceptance\u003c/u\u003e\u003c/p\u003e\n\u003cp\u003eParticipants initially resisted their illness before gradually accepting it, as summarized in Table 2. Participants connected the concept of resistance to focusing on where they felt they “should” be, driven by comparison to others or internalized shame. Four participants (20%) explicitly used the word “shame” to characterize their relationship with their illness; many more implicitly described experiencing it. Notably, shame sprung from a variety of underlying causes and contributed to self-reinforcing behaviors, as shown in Table 3.\u003c/p\u003e\n\u003cp\u003eIf resistance was characterized by (unsuccessful) attempts to ignore physical and emotional needs, acceptance meant acknowledging the reality of illness without being crushed by the weight of that reality. Some overcame shame through self-compassion, which enabled them to open up about their experiences to others, reframe their responsibility for their illness, and forgive themselves for their own limitations: “not being hard on yourself if you feel like you can’t do something” (40 F, S5228470). For instance, one participant situated her illness in the context of shared human struggles, which helped her feel less ashamed of her particular burden:\u003c/p\u003e\n\u003cp\u003e“There’s no reason as to why things happen to certain people and not to others, so there's no point in thinking my life should be different. … This is my thing, the mountain I'm climbing, and everyone has their own.” \u003cem\u003e–39 F, S2644543\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eAs a result, she said, she developed greater “self-awareness and humility and acceptance,” seeing herself as “both completely insignificant and of incalculable significance.” She continued, “I get to decide how I’m going to respond to the things that have happened to me” (39 F, S2644543). For this participant, living with IEI created an opportunity to assert control over her emotional world even in uncontrollable circumstances. Similarly, another participant said the unpredictable nature of chronic illness presented her with a choice of focusing on healthy days or hard ones:\u003c/p\u003e\n\u003cp\u003e“When you have chronic illness, you don’t take moments for granted as much because some days are really good and some days are really bad. So you learn to capitalize on the good days and to appreciate the good days, and also just not get rattled as much by little things that don’t matter.” \u003cem\u003e–28 F, S6531719\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eChoosing to be grateful for the good days helped this participant move through the bad ones. She also shared that practicing her religion helped cultivate this perspective. Other participants likewise cited behaviors that fostered gratitude, including meditating, writing, going outdoors, listening to music, pursuing hobbies, and seeking therapy. As a result, several participants grew through coping with their illness. For instance, one participant identified her increased ability to live in the moment:\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e“Realizing that I wasn't going to go back to being the old [me]…Actually, I feel like I'm happier overall now, even though I have all this anxiety and depression. ... I can just stare at a leaf and be like, ‘Wow, look at that leaf,’ and find the beauty in it, where before I had to always be moving. So I think finding the beauty in the little things, and I feel like I've grasped a part of, like, the meaning of life, more than I did before.” \u003cem\u003e–38 F, S9033160\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eFor her, like many participants, acceptance involved both acknowledging the ongoing reality of her illness and embracing the person she became as a result of her illness.\u003c/p\u003e\n\u003cp\u003e\u003cu\u003eSubtheme 2: from defining to integrating\u003c/u\u003e\u003c/p\u003e\n\u003cp\u003eMany participants grappled with and ultimately rejected the concept of illness as identity. They said “[My illness is] something that I deal with every day, but it’s not who I am” (28 F, S6531719) and emphasized that they were “not letting my condition or disease state control my life” (39 F, S6509727). In fact, defining oneself apart from IEI was closely tied to empowerment:\u003c/p\u003e\n\u003cp\u003e“Nothing’s going to stop me. I might be sick, and I might get admitted to the hospital every now and again. Yeah, I've had a lot of surgeries and those surgeries have left scars. ... But at the end of the day, that's not all of who I am. I can be so much more than the person that was just a victim to an illness.”\u0026nbsp;\u003cem\u003e–\u003c/em\u003e\u003cem\u003e23 M, S3173363\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eFor this participant, a narrative which solely focused on his medical odyssey would not be a complete representation of his story. Instead, participants said, they had to learn how to integrate their illness into their lives without letting it define their identity. This is an especially challenging feat in IEI, which often involves recurrent infections, frequent hospital visits, and daily risk management.To that end, some were initially overwhelmed by medical trauma and struggled to restart their lives as their symptoms stabilized; others were so resistant to being labeled chronically ill that they tried to compartmentalize their illness and carry on as “normal.” Ultimately, to adapt, both groups had to learn to incorporate their illness into their lives—frequent doctor’s visits, lifestyle alterations, emotional support—without being consumed by it. As one participant said, “Yes, I am sick. … but that’s not all that I am. … That’s a part of my life, but it’s not my entire life. So I can make a life beyond a hospital bed” (23 M, S3173363).\u003c/p\u003e\n\u003cp\u003e\u003cu\u003eSubtheme 3: an ongoing process\u003c/u\u003e\u003c/p\u003e\n\u003cp\u003eEven among a cohort of relatively well-adapted participants, several explicitly stated that they are still undergoing a continual process of adaptation. One participant described her illness this way: “It’s like your whole entire life’s been hit by a train – and it just keeps coming back. It doesn’t keep rolling down the tracks. It just keeps making circles and knocking you off your feet” (27 F, S8556521). When participants reflected back on their illness experiences, they identified discrete challenges that emerged in various life stages: elementary school worries were different from adolescent insecurities; dating difficulties in young adulthood were distinct to grieving infertility secondary to transplant. While some coping skills were transferable, new challenges also required novel approaches to adaptation. As one participant said, “That process [of accepting one’s illness] is very messy and circuitous and it’s like one step forward, two steps back, feeling around in the dark… And it’s still happening” (39 F, S2644543). Crucially, the ongoing, dynamic nature of the adaptation process highlights the role of not only time, but effort, context, and support.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTheme 2: Navigating disruptions\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cu\u003eSubtheme 1: control what you can and accept what you can’t\u003c/u\u003e\u003c/p\u003e\n\u003cp\u003eNearly every participant sought to control what they could about their illness and their lives. However, given the unpredictable and chronic nature of IEI, participants had to accept what was outside their control. This delicate balance extended beyond the medical domain to touch on participants’ personal lives and social circles (Table 4).\u003c/p\u003e\n\u003cp\u003eParticipants associated increased control with increased knowledge. Seeking out new information helped participants optimize disease management, feel confident communicating with providers, and diminish anxiety driven by uncertainty. Furthermore, over time, participants increasingly relied on experiential knowledge; they learned to “listen to my body” (39 F, S6509727), pay attention to the body’s “signals” (25 F, S6561773), and become “a pro at my own body” (37 F, S4328287). They leveraged this skill not only for their own self-monitoring, but also for self-advocacy with peers and providers who were unfamiliar with IEI or dismissive of their symptoms.\u003c/p\u003e\n\u003cp\u003eAdditionally, participants associated increased control with increased agency. For instance, many participants vigilantly limited exposure to infectious triggers; however, some also said that making deliberate choices about what risks were worth taking enhanced their control. As one participant said, “There's some risks you have to take and some risks you have to avoid…It's a matter of preventing the germs and still living my life, rather than letting the prevention of germs rule my life” (23 M, S3173363).\u003c/p\u003e\n\u003cp\u003eSeveral participants maintained control by managing their stress levels through therapy, self-care, and modified relational boundaries. However, some struggled to manage the anxiety of trying to control so many aspects of their illness:\u003c/p\u003e\n\u003cp\u003e“You have to constantly be monitoring … Then at a certain point, you’re also kind of thinking, ‘Am I just being overly paranoid? Am I overthinking this? Am I just letting my disease take something that wouldn’t be that big of an issue, but because I have my disease, I’m making it a bigger issue than what it actually is?’ I constantly felt that way. You feel kind of ridiculous when you’re reporting a 99.5-degree fever to a doctor. … It’s kind of like a weird balancing act between those two types of thinking. Trying to be on top of it, so that way you don’t wind up in the hospital or to cut something off before it gets worse, to, ‘Am I just overthinking this?’”\u0026nbsp;\u003cem\u003e–\u003c/em\u003e\u003cem\u003e36 M, S6310326\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eFor this participant, the serious risks associated with common infections made walking the line between appropriate monitoring and hypervigilance feel nearly impossible. Even when symptoms were relatively well-controlled, participants were hesitant to trust they would stay that way. As one participant said: “If it works, it works – but, I mean, will it work forever?” (35 M, S1920177).\u003c/p\u003e\n\u003cp\u003eThus, participants were also forced to face the limits of what could be reasonably controlled. For some, this was an ongoing struggle; for others, surrendering the need for control was ultimately liberating. One participant said:\u003c/p\u003e\n\u003cp\u003e“Each new age, season, that I've entered, I just become more aware of the impact that these illnesses have on my body and on my everyday life. … That's probably where a lot of the anxiety's been coming from, was realizing that lack of control. But at the same time, realizing that because I have such little control, I don't need to carry all of that worry, because it's not helping.” \u003cem\u003e–28 F, S6531719\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eFor her, recognizing the impossibility of controlling every risk meant freedom from constantly striving to do so. While she continued to proactively manage her illness, she released herself from blame for every infection and flare-up.\u003c/p\u003e\n\u003cp\u003e\u003cu\u003eSubtheme 2: empowerment through overcoming\u003c/u\u003e\u003c/p\u003e\n\u003cp\u003eFor many participants, the greatest burden of IEI was its interruptive impact on their daily lives. They described themselves as “stuck” (37 F, S4328287, 39 F, S0583046), on “pause” (25 F, S6632797), or “hindered from making progress” in life (27 F, S7235706). Often, they used comparative language to contrast their experiences with their healthy peers or their own anticipated narrative for their lives.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e“I felt initially very cheated. I was supposed to go to law school. I was going to do the Peace Corps. I had all these plans and things just didn't work out that way for me and I watched my peers moving forward in their careers. … I sort of felt like my life was supposed to be different and it's kind of hard to reconcile myself to the fact that this was the way things are.” \u003cem\u003e–39 F, S2644543\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eAs this participant described, the onset of IEI often redirected entire life trajectories. Some participants chose where to live as adults based on access to care. Participants highlighted extra considerations around dating, sex, pregnancy, parenting, travel, beauty, work, school, sports, shopping, and social dynamics. As one said, “I was aware very early on that I wasn’t the same. ... It was very evident that they didn’t have to worry about the same things that I did” (36 M, S6310326). She expressed that living with IEI requires living intentionally across many dimensions that others might not give a second thought; this sometimes fostered anxiety and other times cultivated determination.\u003c/p\u003e\n\u003cp\u003eWhile IEI often caused permanent life redirection, participants adapted by finding new ways to meet their goals, such as shifting to remote work, or by setting new goals entirely, such as pursuing a new career in advocacy. The determination to overcome barriers was a source of empowerment and self-esteem for these participants.\u003c/p\u003e\n\u003cp\u003e“Everything that's happened to me has made me who I am and made me this goal-driven, determined person, regardless of anything that goes on. … I can do anything I want with this determination and with the amount of fight, if you will, that these experiences have given to me. I've almost died countless times. I've been on gurneys and tubes hooked up and everything like that. No amount of anxiety at work or no amount of failing a test is ever going to put me back in that situation – so there's nothing that I can't get past.”\u0026nbsp;\u003cem\u003e–\u003c/em\u003e\u003cem\u003e23 M, S3173363\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThis participant expressed that his experiences with IEI had altered his life trajectory from what he had expected, but he was proud of the person he had become through that journey.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTheme 3: Renegotiating community\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cu\u003eSubtheme 1: unhelpful relationships fail to empathize\u003c/u\u003e\u003c/p\u003e\n\u003cp\u003eParticipants shared that their illness and their relationships impacted each other reciprocally: their illness reshaped their relationships, and their relationships influenced their experience of their illness. While living with IEI deepened some relationships, many participants also recounted moments of isolation. As one participant said:\u003c/p\u003e\n\u003cp\u003e“You feel so alone, so isolated. Nobody is really going to understand unless they have lived it. I think it was over two years before I actually met another patient, and it was another year before I met a patient that had the same exact diagnosis as me. That feeling of isolation and aloneness really can take a toll on a patient’s psyche, emotionally, mentally, spiritually, physically, all of it. It all encompasses all those things.” \u003cem\u003e–39 F, S6509727\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eLike many participants, she grounded her experience of isolation in others’ lack of understanding her experience. Participants described five main ways they felt estranged by others’ lack of understanding, which made them feel either invisible or hyper-visible (Figure 1).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eFirst, participants were hurt by loved ones who refused to accept their illness. These ranged from formal relationships with providers who chose to treat symptoms rather than look for an underlying cause to peers and family members who accused participants of being mistaken, dramatic, or deceitful. Notably, minimizing symptoms and encouraging risk behaviors were the most common reasons participants cited for setting boundaries or ending certain relationships. Second, participants expressed the burden of having to constantly explain their symptoms, correct misconceptions, or justify their choices. Third, participants felt they had to manage others’ emotions in addition to their own, since many people didn’t know how to react to their illness. Fourth, participants struggled with others’ pity or worry. For some, already concerned about burdening others with the demands of their illness, worry reinforced shame. Others felt patronized, victimized, or singled out. Finally, participants described painful experiences of stigma and embarrassment. For many, self-consciousness was particularly acute during adolescence, but for some, it persisted into adulthood, often depending on the visibility of their symptoms.\u003c/p\u003e\n\u003cp\u003eParticipants’ illness, often onset early in life, created a gap between their experiences and their peers’ expectations. Friends and family members who failed to bridge that gap contributed to participants’ negative views of themselves and their illness. Some participants crossed that divide through clear communication about their needs, both physical and emotional, but their ability to do so was dependent on the willingness of the other party to engage in that process. As a result, some relationships were ultimately deemed beyond repair.\u003c/p\u003e\n\u003cp\u003e\u003cu\u003eSubtheme 2: helpful relationships validate and adjust\u003c/u\u003e\u003c/p\u003e\n\u003cp\u003eBy contrast, participants felt supported by family members and friends who validated their experiences, adjusted to their needs, and reframed their perspective.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eFirst, when loved ones listened to participants’ accounts of their illness, participants felt supported. Since IEI can be an invisible illness, simply being believed was a crucially validating experience for many participants, especially in contrast to skepticism from others.\u003c/p\u003e\n\u003cp\u003eSecond, participants appreciated those who acknowledged and adapted to their needs, both physical and emotional. For instance, participants said loved ones drove when they were unable, sent cards or text messages to the hospital, and maintained their friendship despite altered rhythms and abilities. As one participant said:\u003c/p\u003e\n\u003cp\u003e“[My illness] is not something I talk about regularly, so I didn’t even think that they would put two and two together and remember [when the pandemic hit]. So that was kind of nice and heartwarming, that friends and cousins and stuff were like, ‘Hey, what do you need? We can get it if you can’t go out or don’t want to go out.’” \u003cem\u003e–27 F, S8556521\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eFinally, participants valued those who helped them reframe their view of their illness and themselves. Participants often quoted specific conversations that reshaped their perspective: “The person that I am inside – that will always be the same person” (39 F, S0583046); “Nobody was mad at me for not telling them; all they wanted was for me to be happy and healthy” (37 F, S4328287); “You have a chronic illness, but you also have a life to live” (24 F, S9633781). One participant specifically cited her healthcare provider:\u003c/p\u003e\n\u003cp\u003e“My immunologist, this past year, she kind of said, ‘So what are you doing?’ That’s when I kind of like had a moment of, ‘I actually can do things with the chronic illness.’ Even though I have a central line and stuff and I have to be hooked up to a bookbag and everybody else doesn’t, I can still go to class.” \u003cem\u003e–39 F, S0583046\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eFor her, the onset of IEI was so life-shattering that she had to rebuild her identity and understanding of her abilities in the wake of recovery; outside encouragement was an essential catalyst in that process. Another participant similarly highlighted the impact from seeming providers’ seemingly small interventions:\u003c/p\u003e\n\u003cp\u003e“I've been in a few scenarios where a doctor recognized that I was struggling mentally ... The times when they just took a moment and they were like, ‘I can see that you're really stressed out about this’ – even if I started crying when they said that, I felt better 30 seconds later … For the most part, adults will pull themselves together. It's just that 30 seconds to a minute of being able to let a little bit of it out in the presence of someone who you feel cares about you, at least temporarily. That would go a long way.” \u003cem\u003e–39 F, S2644543\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eWhen appointments were overwhelming, having the opportunity to voice her anxiety to her provider helped alleviate her distress.\u003c/p\u003e\n\u003cp\u003eOverall, most participants experienced both helpful and unhelpful relationships; the biggest difference between them was the extent to which loved ones were willing to engage participants around their illness experience rather than either defining them by it or ignoring it altogether. Notably, supportive relationships were marked not necessarily by complete understanding, but simply by validation and encouragement.\u003c/p\u003e\n\u003cp\u003e\u003cu\u003eSubtheme 3: opportunities to give back are meaningful\u003c/u\u003e\u003c/p\u003e\n\u003cp\u003eImportantly, participants also valued opportunities to invest in others. Given the rarity of IEI, many participants found meaning in contributing to research and taking on advocacy roles, either formally or informally.\u003c/p\u003e\n\u003cp\u003eParticipation in research was understood by participants as a way to benefit others in the future, so that “someone doesn’t have to go what I went through, years and years of pain and ups and downs” (40 F, S5228470). Participants’ advocacy activities included providing resources to other patients, educating physicians and fellow patients, volunteering, fundraising, and even changing careers. Communicating their experiences to others was especially meaningful; participants who wrote or spoke in public described it as “cathar[tic]” (25 F, S6561773) and “therapeutic” (37 F, S4328287) in addition to the benefits of educating others.\u003c/p\u003e\n\u003cp\u003eThese activities required time and energy, yet participants said focusing on others gave them a sense of purpose. For example, one said, “If I worry less about myself and more about others, I find that that’s super helpful. It’s really hard to do when you’re not feeling well. …To stay out of your own head and help you stay focused, [helping other people] has been really helpful” (30 M, S0500585).\u003c/p\u003e\n\u003cp\u003eGenetic diagnosis provided validation and relieved guilt for some, but most participants found meaning apart from causal explanations for their illness. Several participants found more relief in the idea that “there’s just kind of no rhyme or reason to it” (40 F, S5228470) than that “this has to have happened for a reason” (24 F, S9633781). Instead, they emphasized the value of leveraging their experiences to help others, restoring a sense of worth in the wake of their illness.\u003c/p\u003e"},{"header":"Discussion","content":"\u003cp\u003eThis study is the first to our knowledge to qualitatively explore psychological adaptation to IEI. Participants had to re-evaluate their relationship 1) with themselves, grappling with shame and loss through acceptance and integration; 2) with their circumstances, wrestling for control over fundamentally uncontrollable outcomes; and 3) with others, renegotiating their social ecosystem in the context of new needs. However, the reality is more complex: all three of these relationships overlap and entangle with each other. Ultimately, participants showed that adaptation to life with IEI is multifaceted, ongoing, and possible.\u003c/p\u003e\n\u003cp\u003eIn many ways, adaptation to IEI required navigating apparent paradoxes. Participants held onto identities beyond their illness even as they allowed themselves to be changed by it. They felt comforted by the shared experience of human illness while feeling isolated by their unique expression of it. They mourned the loss of their expected trajectories while adjusting to new goals. They had to invest significant energy toward controlling their symptoms while simultaneously accepting that those efforts were no guarantee of security. They found peace in allowing themselves to rest and rely on others while being empowered by overcoming obstacles with determined persistence. They balanced their unique experiential knowledge with a need for support and validation from others. They emphasized making meaning \u003cem\u003ein\u003c/em\u003e their illness rather than \u003cem\u003eof\u003c/em\u003e it.\u003c/p\u003e\n\u003cp\u003eIf the process of adaptation involves finding a livable balancing point along each of these spectra, every change in illness manifestations or life circumstances adds new weight to either end, forcing recalibration to a new equilibrium. As participants lived with their illness over the course of many years, they constantly readjusted to new challenges. As others have identified, adaptation is an iterative process that continues throughout the lifespan, with many ups and downs (Ambrosio et al. 2015).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eHowever, while adaptation has no arrival, progress is still possible. Despite the emergence of new challenges, all participants described psychological adaptation and personal growth over the years since their diagnosis.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eImplications for theory\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThese data add nuance to existing theories of adaptation, highlighting distinctives of rare and chronic disease communities. In accordance with Taylor’s theory (Taylor 1983), our participants affirmed that meaning making and mastery were core concepts. However, participants experienced meaning largely through personal growth and helping others, rather than identifying a causal attribution for their illness. Participants also emphasized that asserting control was balanced by accepting a lack of control, a novel addition to prior frameworks (Setzer et al. 2023; Taylor 1983; Ambrosio et al. 2015). In contrast to Taylor’s participants who compared themselves to cancer patients worse off than themselves, our participants tended to compare themselves to their healthy peers. This distinction may be one area where the divide between rare and common disease becomes relevant. Finally, participants shared that support was largely experienced through validation as predicted by the social-cognitive processing model (Lepore 2001). Future research should explore practice implications of these differences across groups and explore the overlap of these factors in other rare and chronic disease communities.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eImplications for practice\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe psychological burden of illness can be as complex and debilitating as the physical burden. Our participants suggested that providers can facilitate psychological adaptation in three key ways: 1) asking, 2) suggesting, and 3) helping.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eFirst, simply asking about a person’s coping can itself facilitate coping. Questions can prompt patients to process emotions, identify opportunities for change, and reflect on their own strengths. Medical providers may ask one or two broad but intentional questions, like “How have you been coping with all of this?” or offer a simple reflection, like “I know this process has been really hard on you.” Providers specifically focused on facilitating adaptation, such as genetic counselors and therapists, may draw on the questions proposed in Box 1 for longer conversations, as well as established therapeutic interventions to facilitate meaning making, enhance perceived control, and identify sources of support (B. Biesecker and Erby 2008; Helm 2015).\u003c/p\u003e\n\u003cp\u003eSecond, after listening to a patient’s experience, providers may suggest alternate perspectives, drawing on principles of narrative therapy and strengths-based interventions\u0026nbsp;(MacLeod, Metcalfe, and Ferrer‐Duch 2021; Padesky and Mooney 2012; Dane et al. 2024). This does \u003cem\u003enot\u003c/em\u003e mean finding a “silver lining” or “looking on the bright side.” Rather, this means reminding patients that they are more than their illness. For instance, providers may be able to reframe a despairing narrative to identify a patient’s strengths amid their challenging circumstances: “I can see that this has taken a heavy toll on you, and continuing to engage in care while you pursue your goals really shows your resilience and determination.”\u003c/p\u003e\n\u003cp\u003eThird, while adaptation is not a problem to be solved but a process to engage with, providers can offer practical help. For instance, rather than merely recommending therapy, clinicians can provide specific referrals. Doctors can enhance control by explaining concepts in patient-friendly language. Providers can offer opportunities for meaning and connection by referring patients to advocacy groups. Ideally, these interventions would be tailored to a patient’s specific needs and struggles.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eLimitations\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eOverall, this study is a novel exploration of the process of adaptation to IEI over the life course.However, these findings should be considered in the context of several limitations. First, there is possible selection bias as all participants voluntarily engaged in a relatively lengthy interview. Although our interviews achieved saturation, it is possible that non-participants may have unique approaches to adaptation. Additionally, the eligible population was drawn from a larger NIH research protocol which may not be representative of all cases of IEI; it is possible this group is enriched for more complex or undiagnosed cases. Finally, the racial and ethnic background of our cohort is over-representative of white, non-Hispanic participants as compared to the broader United States population.\u003c/p\u003e"},{"header":"Conclusion and future directions","content":"\u003cp\u003eAdaptation is a constantly evolving process that requires repeatedly confronting both practical and existential questions. In alignment with prior studies, meaning, control, and support were key to this process (Taylor 1983; B. Biesecker and Erby 2008; Similuk et al. 2016; Lepore 2001); this work added nuance to all three concepts through eliciting psychological narratives of integrating illness into life, accepting lack of control, and making meaning beyond causal attributions.\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003eFurther research is needed to understand the strength and direction of relationships among the various factors contributing to adaptation, specific needs of patients across the life course, and optimal interventions to address those needs.\u0026nbsp;\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eFunding\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis research was funded by the Division of Intramural Research, National Institute of Allergy and Infectious Diseases.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConflict of interest\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors declare no conflicts of interest.\u0026nbsp;The opinions and assertions expressed herein are those of the author(s) and do not necessarily reflect the official policy or position of the Uniformed Services University, the Department of Defense, or the Department of Health and Human Services.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompliance with ethics guidelines\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eAll procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000. Informed consent was obtained from all patients for being included in the study.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eData availability\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe interview data generated for this study are not publicly available in order to maintain participant confidentiality. However, de-identified excerpts may be requested for review by contacting the corresponding author.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n\u003cli\u003eAmbrosio, Leire, Juana Maria Senosiain Garc\u0026iacute;a, Mario Riverol Fern\u0026aacute;ndez, Sagrario Anaut Bravo, Sara D\u0026iacute;az De Cerio Ayesa, Mar\u0026iacute;a Eugenia Urs\u0026uacute;a Sesma, Neus Caparr\u0026oacute;s, and Mari Carmen Portillo. 2015. \u0026ldquo;Living with Chronic Illness in Adults: A Concept Analysis.\u0026rdquo; \u003cem\u003eJournal of Clinical Nursing\u003c/em\u003e 24 (17\u0026ndash;18): 2357\u0026ndash;67. https://doi.org/10.1111/jocn.12827.\u003c/li\u003e\n\u003cli\u003eAnderson, John T., Juthaporn Cowan, Antonio Condino-Neto, Donald Levy, and Subhransu Prusty. 2022. \u0026ldquo;Health-Related Quality of Life in Primary Immunodeficiencies: Impact of Delayed Diagnosis and Treatment Burden.\u0026rdquo; \u003cem\u003eClinical Immunology (Orlando, Fla.)\u003c/em\u003e 236 (March):108931. https://doi.org/10.1016/j.clim.2022.108931.\u003c/li\u003e\n\u003cli\u003eBahrami, A., S. 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Washington, DC, US: American Psychological Association. https://doi.org/10.1037/10402-006.\u003c/li\u003e\n\u003cli\u003eMacLeod, Rhona, Alison Metcalfe, and Mariangels Ferrer‐Duch. 2021. \u0026ldquo;A Family Systems Approach to Genetic Counseling: Development of Narrative Interventions.\u0026rdquo; \u003cem\u003eJournal of Genetic Counseling\u003c/em\u003e 30 (1): 22\u0026ndash;29. https://doi.org/10.1002/jgc4.1377.\u003c/li\u003e\n\u003cli\u003eManusama, Olivia R., Nico J. M. van Beveren, P. Martin van Hagen, Hemmo A. Drexhage, and Virgil A. S. H. Dalm. 2022. \u0026ldquo;Psychological Symptoms in Primary Immunodeficiencies: A Common Comorbidity?\u0026rdquo; \u003cem\u003eJournal of Clinical Immunology\u003c/em\u003e 42 (3): 695\u0026ndash;98. https://doi.org/10.1007/s10875-022-01207-7.\u003c/li\u003e\n\u003cli\u003eNicholson, Bethany, Rupert Goodman, James Day, Austen Worth, Ben Carpenter, Kit Sandford, Emma C. 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Duran-Persson, C. Cale, G. Davies, H. Gaspar, and A. Jones. 2014. \u0026ldquo;Quality of Life in Children with Primary Antibody Deficiency.\u0026rdquo; \u003cem\u003eJournal of Clinical Immunology\u003c/em\u003e 34 (7): 844\u0026ndash;52. https://doi.org/10.1007/s10875-014-0072-x.\u003c/li\u003e\n\u003cli\u003eUrschel, Simon, Lale Kayikci, Uwe Wintergerst, Gundula Notheis, Annette Jansson, and Bernd H. Belohradsky. 2009. \u0026ldquo;Common Variable Immunodeficiency Disorders in Children: Delayed Diagnosis Despite Typical Clinical Presentation.\u0026rdquo; \u003cem\u003eThe Journal of Pediatrics\u003c/em\u003e 154 (6): 888\u0026ndash;94. https://doi.org/10.1016/j.jpeds.2008.12.020.\u003c/li\u003e\n\u003cli\u003eVorsteveld, Emil E., Alexander Hoischen, and Caspar I. van der Made. 2021. \u0026ldquo;Next-Generation Sequencing in the Field of Primary Immunodeficiencies: Current Yield, Challenges, and Future Perspectives.\u0026rdquo; \u003cem\u003eClinical Reviews in Allergy \u0026amp; Immunology\u003c/em\u003e 61 (2): 212\u0026ndash;25. https://doi.org/10.1007/s12016-021-08838-5.\u003c/li\u003e\n\u003c/ol\u003e"},{"header":"Tables","content":"\u003cp\u003e\u003cstrong\u003eTable 1\u003c/strong\u003e \u003cem\u003eParticipant characteristics\u003c/em\u003e\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 144px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 212px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eAttribute\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 63px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eN\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e%\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 71px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eMean\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 68px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eSt. Dev.\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 144px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eAge\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 212px;\"\u003e\n \u003cp\u003eYears\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 63px;\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 71px;\"\u003e\n \u003cp\u003e32.3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 68px;\"\u003e\n \u003cp\u003e6.51\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"2\" valign=\"top\" style=\"width: 144px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eSex\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 212px;\"\u003e\n \u003cp\u003eFemale\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 63px;\"\u003e\n \u003cp\u003e13\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e65%\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 71px;\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 68px;\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 212px;\"\u003e\n \u003cp\u003eMale\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 63px;\"\u003e\n \u003cp\u003e7\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e35%\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 71px;\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 68px;\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"4\" valign=\"top\" style=\"width: 144px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eRace\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 212px;\"\u003e\n \u003cp\u003eAsian\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 63px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e5%\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 71px;\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 68px;\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 212px;\"\u003e\n \u003cp\u003eNative Hawaiian or Pacific Islander\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 63px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e5%\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 71px;\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 68px;\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 212px;\"\u003e\n \u003cp\u003eWhite\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 63px;\"\u003e\n \u003cp\u003e17\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e85%\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 71px;\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 68px;\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 212px;\"\u003e\n \u003cp\u003eUnknown\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 63px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e5%\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 71px;\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 68px;\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"3\" valign=\"top\" style=\"width: 144px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eEthnicity\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 212px;\"\u003e\n \u003cp\u003eHispanic or Latino\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 63px;\"\u003e\n \u003cp\u003e5\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e25%\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 71px;\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 68px;\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 212px;\"\u003e\n \u003cp\u003eNot Hispanic or Latino\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 63px;\"\u003e\n \u003cp\u003e14\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e70%\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 71px;\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 68px;\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 212px;\"\u003e\n \u003cp\u003eUnknown\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 63px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e5%\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 71px;\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 68px;\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"7\" valign=\"top\" style=\"width: 144px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eSelf-reported diagnoses\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 212px;\"\u003e\n \u003cp\u003eCommon variable immune deficiency (CVID)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 63px;\"\u003e\n \u003cp\u003e5\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e25%\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 71px;\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 68px;\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 212px;\"\u003e\n \u003cp\u003eGATA2 deficiency\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 63px;\"\u003e\n \u003cp\u003e5\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e25%\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 71px;\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 68px;\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 212px;\"\u003e\n \u003cp\u003eDOCK8-related hyper-IgE syndrome, Job\u0026rsquo;s syndrome\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 63px;\"\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e10%\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 71px;\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 68px;\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 212px;\"\u003e\n \u003cp\u003eAutoimmune polyendocrinopathy-candidiasis-ectodermal dystrophy (APECED)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 63px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e5%\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 71px;\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 68px;\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 212px;\"\u003e\n \u003cp\u003eChronic granulomatous disease (CGD)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 63px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e5%\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 71px;\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 68px;\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 212px;\"\u003e\n \u003cp\u003ePrimary ciliary deficiency (PCD)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 63px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e5%\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 71px;\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 68px;\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 212px;\"\u003e\n \u003cp\u003eOther\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 63px;\"\u003e\n \u003cp\u003e5\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e25%\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 71px;\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 68px;\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"2\" valign=\"top\" style=\"width: 144px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eHSCT\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 212px;\"\u003e\n \u003cp\u003eYes\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 63px;\"\u003e\n \u003cp\u003e7\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e35%\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 71px;\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 68px;\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 212px;\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 63px;\"\u003e\n \u003cp\u003e13\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e65%\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 71px;\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 68px;\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"5\" valign=\"top\" style=\"width: 144px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eTime since illness onset\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 212px;\"\u003e\n \u003cp\u003e\u0026lt;1 year\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 63px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e5%\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 71px;\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 68px;\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 212px;\"\u003e\n \u003cp\u003e1 - 5 years\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 63px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e5%\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 71px;\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 68px;\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 212px;\"\u003e\n \u003cp\u003e5 - 10 years\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 63px;\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e15%\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 71px;\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 68px;\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 212px;\"\u003e\n \u003cp\u003e\u0026gt;10 years\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 63px;\"\u003e\n \u003cp\u003e14\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e70%\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 71px;\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 68px;\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 212px;\"\u003e\n \u003cp\u003eUnsure\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 63px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e5%\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 71px;\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 68px;\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 144px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eAdaptation\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 212px;\"\u003e\n \u003cp\u003ePAS score\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 63px;\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 71px;\"\u003e\n \u003cp\u003e4.16\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 68px;\"\u003e\n \u003cp\u003e0.33\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 144px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eAnxiety\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 212px;\"\u003e\n \u003cp\u003ePROMIS 29 Profile v2.1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 63px;\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 71px;\"\u003e\n \u003cp\u003e61.7\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 68px;\"\u003e\n \u003cp\u003e7.71\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 144px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eDepression\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 212px;\"\u003e\n \u003cp\u003ePROMIS 29 Profile v2.1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 63px;\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 71px;\"\u003e\n \u003cp\u003e54.2\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 68px;\"\u003e\n \u003cp\u003e7.54\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003e\u003cstrong\u003eTable 2\u0026nbsp;\u003c/strong\u003e\u003cem\u003eRewriting the narrative from resistance to acceptance\u003c/em\u003e\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\" width=\"627\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 273px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u003cu\u003eRESISTANCE\u003c/u\u003e\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 273px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u003cu\u003eACCEPTANCE\u003c/u\u003e\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 81px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u003cu\u003eID\u003c/u\u003e\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 0px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u003cem\u003eShame\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 0px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u003cem\u003eSelf-compassion\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 0px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 273px;\"\u003e\n \u003cp\u003e\u0026ldquo;I buried it in a way that I didn\u0026rsquo;t let myself feel it.\u0026rdquo;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 273px;\"\u003e\n \u003cp\u003e\u0026ldquo;I have other things that I\u0026rsquo;m going through than my friends, but that doesn\u0026rsquo;t make me a broken person.\u0026rdquo;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 81px;\"\u003e\n \u003cp\u003e37 F, S4328287\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 273px;\"\u003e\n \u003cp\u003e\u0026ldquo;I did a really good job at hiding for a really long time\u0026hellip;I was just trying to fit in.\u0026rdquo;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 273px;\"\u003e\n \u003cp\u003e\u0026ldquo;It feels so much better to come out and just be myself.\u0026rdquo;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 81px;\"\u003e\n \u003cp\u003e37 F, S4328287\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 273px;\"\u003e\n \u003cp\u003e\u0026ldquo;I would push through it, but then it would make it worse for days.\u0026rdquo;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 273px;\"\u003e\n \u003cp\u003e\u0026ldquo;I\u0026rsquo;ve learned to rest when I feel exhausted.\u0026rdquo;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 81px;\"\u003e\n \u003cp\u003e38 F, S9033160\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 273px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u003cem\u003eComparison\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 273px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u003cem\u003eGratitude\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 81px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 273px;\"\u003e\n \u003cp\u003e\u0026ldquo;If you are only busy with your illness, it will make you a depressive person.\u0026rdquo;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 273px;\"\u003e\n \u003cp\u003e\u0026ldquo;But if you try to live your life at a positive way, it will give your life more joy and more rest.\u0026rdquo;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 81px;\"\u003e\n \u003cp\u003e39 F, S0583046\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 273px;\"\u003e\n \u003cp\u003e\u0026ldquo;Of course, there are days that I\u0026apos;m asking myself why I feel the pain, why I\u0026apos;m getting to all of this. Why is all of this happening?\u0026rdquo;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 273px;\"\u003e\n \u003cp\u003e\u0026ldquo;But then I\u0026apos;m going to listen to music and do meditation and look outside and think about how beautiful life is.\u0026rdquo;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 81px;\"\u003e\n \u003cp\u003e39 F, S0583046\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 273px;\"\u003e\n \u003cp\u003e\u0026ldquo;Your thoughts, too, can make you sick.\u0026rdquo;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 273px;\"\u003e\n \u003cp\u003e\u0026ldquo;So think positive. ... I\u0026rsquo;m getting ready to be a new person.\u0026rdquo;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 81px;\"\u003e\n \u003cp\u003e37 M, S8251256\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 273px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u003cu\u003eDEFINING\u003c/u\u003e\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 273px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u003cu\u003eINTEGRATING\u003c/u\u003e\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 81px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 273px;\"\u003e\n \u003cp\u003e\u0026ldquo;It\u0026rsquo;s just become such a huge part of my life.\u0026rdquo;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 273px;\"\u003e\n \u003cp\u003e\u0026ldquo;I need to stop letting this illness define who I am, because it\u0026rsquo;s not who I am.\u0026rdquo;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 81px;\"\u003e\n \u003cp\u003e27 F, S7235706\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 273px;\"\u003e\n \u003cp\u003e\u0026ldquo;To be able to manage it on my own and not be defined by my health.\u0026rdquo;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 273px;\"\u003e\n \u003cp\u003e\u0026ldquo;Instead, to learn from it and help other people go through it as well.\u0026rdquo;\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 81px;\"\u003e\n \u003cp\u003e37 F, S4328287\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 273px;\"\u003e\n \u003cp\u003e\u0026ldquo;I might be sick and I might get admitted to the hospital every now and again. Yeah, I\u0026apos;ve had a lot of surgeries and those surgeries have left scars and they\u0026apos;ve left this and that.\u0026rdquo;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 273px;\"\u003e\n \u003cp\u003e\u0026ldquo;It was kind of this realization that nothing\u0026rsquo;s going to stop me. \u0026hellip; At the end of the day, that\u0026apos;s not all of who I am. I can be so much more than the person that was just a victim to an illness.\u0026rdquo;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 81px;\"\u003e\n \u003cp\u003e23 M, S3173363\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003e\u003cstrong\u003eTable 3\u0026nbsp;\u003c/strong\u003e\u003cem\u003eAdaptation in the context of shame\u003c/em\u003e\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"5\" valign=\"top\" style=\"width: 117px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eDrivers of shame\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 117px;\"\u003e\n \u003cp\u003eLack of agency\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 390px;\"\u003e\n \u003cp\u003e\u0026ldquo;I almost hated myself for that, too, because I never knew what was wrong with me; I always would almost blame myself.\u0026rdquo; \u003cem\u003e\u0026ndash;25 F, S6632797\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 117px;\"\u003e\n \u003cp\u003eFeeling different\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 390px;\"\u003e\n \u003cp\u003e\u0026ldquo;I just wanted so badly to fit in and look like my friends and not behind the scenes deal with this stuff that affected me, that I didn\u0026rsquo;t realize it was affecting me then emotionally.\u0026rdquo; \u003cem\u003e\u0026ndash;37 F, S4328287\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 117px;\"\u003e\n \u003cp\u003eSurvivorship\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 390px;\"\u003e\n \u003cp\u003e\u0026ldquo;I had met somebody in the hospital\u0026hellip;I watched him die in the ICU.\u0026rdquo; \u003cem\u003e\u0026ndash;25 F, S6632797\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 117px;\"\u003e\n \u003cp\u003eBurden of care\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 390px;\"\u003e\n \u003cp\u003e\u0026ldquo;I am dependent. I need him. Sometimes it\u0026rsquo;s shameful.\u0026rdquo; \u003cem\u003e\u0026ndash;39 F, S0583046\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 117px;\"\u003e\n \u003cp\u003eHeritability of disease\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 390px;\"\u003e\n \u003cp\u003e\u0026ldquo;Sometimes I blame myself that [my daughter] has [GATA2].\u0026rdquo; \u003cem\u003e\u0026ndash;39 F, S0583046\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"4\" valign=\"top\" style=\"width: 117px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eMaladaptive responses to shame\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 117px;\"\u003e\n \u003cp\u003eSuppress emotions\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 390px;\"\u003e\n \u003cp\u003e\u0026ldquo;I buried it in a way that I didn\u0026rsquo;t let myself feel it.\u0026rdquo; \u003cem\u003e\u0026ndash;37 F, S4328287\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 117px;\"\u003e\n \u003cp\u003eAvoid discussing illness\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 390px;\"\u003e\n \u003cp\u003e\u0026ldquo;I did a really good job at hiding for a really long time\u0026hellip;I was just trying to fit in.\u0026rdquo; \u003cem\u003e\u0026ndash;37 F, S4328287\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 117px;\"\u003e\n \u003cp\u003eResist limitations of illness\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 390px;\"\u003e\n \u003cp\u003e\u0026ldquo;I would push through it, but then it would make it worse for days.\u0026rdquo; \u003cem\u003e\u0026ndash;38 F, S9033160\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 117px;\"\u003e\n \u003cp\u003eIgnore health demands\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 390px;\"\u003e\n \u003cp\u003e\u0026ldquo;I was looking to put Band-Aids on everything physically and emotionally.\u0026rdquo; \u003cem\u003e\u0026ndash;37 F, S4328287\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"5\" valign=\"top\" style=\"width: 117px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eAdaptive responses to shame\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 117px;\"\u003e\n \u003cp\u003eReframe internal narrative\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 390px;\"\u003e\n \u003cp\u003e\u0026ldquo;When I started telling myself a different story, it changed everything.\u0026rdquo; \u003cem\u003e\u0026ndash;39 F, S2644543\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 117px;\"\u003e\n \u003cp\u003eAcknowledge illness to others\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 390px;\"\u003e\n \u003cp\u003e\u0026ldquo;There are certain times where \u0026hellip; I\u0026rsquo;m not in the mood to talk, and then when I talk, I\u0026rsquo;m like, \u0026ldquo;I\u0026rsquo;m so glad I talked. I\u0026rsquo;m so glad someone listened. I\u0026rsquo;m so glad someone was there for me.\u0026rdquo;\u0026rdquo; \u003cem\u003e\u0026ndash;37 F, S4328287\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 117px;\"\u003e\n \u003cp\u003eAccept ongoing reality of illness\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 390px;\"\u003e\n \u003cp\u003e\u0026ldquo;There\u0026rsquo;s nothing that\u0026rsquo;s going to change it.\u0026rdquo; \u003cem\u003e\u0026ndash;25 F, S6632797\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 117px;\"\u003e\n \u003cp\u003eInternalize uncaused nature of illness\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 390px;\"\u003e\n \u003cp\u003e\u0026ldquo;It wasn\u0026rsquo;t my fault; it is what it is. People get sick and that\u0026rsquo;s just the reality of life.\u0026rdquo; \u003cem\u003e\u0026ndash;40 F, S5228470\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 117px;\"\u003e\n \u003cp\u003eGive oneself permission to alter lifestyle\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 390px;\"\u003e\n \u003cp\u003e\u0026ldquo;That was something I had to teach myself, was that it\u0026rsquo;s okay to rest.\u0026rdquo; \u003cem\u003e\u0026ndash;25 F, S6561773\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003e\u003cstrong\u003eTable 4\u0026nbsp;\u003c/strong\u003e\u003cem\u003eBalancing control and acceptance in medical, personal, and social spheres\u003c/em\u003e\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\" width=\"605\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 23px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" style=\"width: 291px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eControl what you can\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" style=\"width: 290px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eAccept what you can\u0026rsquo;t\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"4\" style=\"width: 23px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eMedically\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 74px;\"\u003e\n \u003cp\u003eLearn about illness\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 218px;\"\u003e\n \u003cp\u003e\u0026ldquo;If you know more about your illness, you can live your life better. \u0026hellip; If you don\u0026apos;t know much about your illness, you keep struggling and keep asking, \u0026lsquo;Why is this happening this to me? What is happening? Why do I get all those infections?\u0026rsquo;\u0026rdquo; \u003cem\u003e\u0026ndash;39 F, S0583046\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 77px;\"\u003e\n \u003cp\u003eAdjust to new physical limitations\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 213px;\"\u003e\n \u003cp\u003e\u0026ldquo;I couldn\u0026rsquo;t do normal things. ... Finding different programs or different exercises that I can do \u0026hellip; has helped a lot. I think I found a good balance of knowing what I can and can\u0026rsquo;t do and doing what I can to make it so maybe someday I can do those things that I now can\u0026rsquo;t do.\u0026rdquo; \u003cem\u003e\u0026ndash;27 F, S7235706\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 74px;\"\u003e\n \u003cp\u003eDevelop body awareness\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 218px;\"\u003e\n \u003cp\u003e\u0026ldquo;Something coming on or something not feeling right, I\u0026rsquo;m very attuned to that. I think I\u0026rsquo;ve become a pro at my own body.\u0026rdquo; \u003cem\u003e\u0026ndash;37 F, S4328287\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 77px;\"\u003e\n \u003cp\u003eUnderstand the limits of non-expert providers\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 213px;\"\u003e\n \u003cp\u003e\u0026ldquo;Even if a doctor tells me something is not true \u0026hellip; I don\u0026rsquo;t feel \u0026hellip; like I\u0026rsquo;m crazy, because I know my body better than a doctor could.\u0026rdquo; \u003cem\u003e\u0026ndash;25 F, S6561773\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 74px;\"\u003e\n \u003cp\u003eGain fluency with healthcare system\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 218px;\"\u003e\n \u003cp\u003e\u0026ldquo;I\u0026rsquo;ve also learned a lot of the medical terminology for my issues; that makes me feel a little bit more in control whenever I\u0026rsquo;m talking to a doctor.\u0026rdquo; \u003cem\u003e\u0026ndash;25 F, S6561773\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 77px;\"\u003e\n \u003cp\u003eAccept diagnostic and prognostic uncertainty\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 213px;\"\u003e\n \u003cp\u003e\u0026ldquo;What I have still is just kind of like unknown, and I think that\u0026apos;s what\u0026apos;s the hardest part. \u0026hellip; I\u0026apos;ve just accepted that whether it\u0026apos;s got some acronym or not, it doesn\u0026apos;t really matter.\u0026rdquo; \u003cem\u003e\u0026ndash;38 F, S9033160\u003c/em\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 74px;\"\u003e\n \u003cp\u003eManage infectious exposures\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 218px;\"\u003e\n \u003cp\u003e\u0026ldquo;I can control, for the most part, what germs I\u0026apos;ve been exposed to, who I\u0026apos;m exposed to who\u0026apos;s sick, if I\u0026apos;m exposed to anyone that\u0026apos;s sick.\u0026rdquo; \u003cem\u003e\u0026ndash;23 M, S3173363\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 77px;\"\u003e\n \u003cp\u003eRecognize inevitability of exposure\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 213px;\"\u003e\n \u003cp\u003e\u0026ldquo;It\u0026rsquo;s a matter of preventing the germs and still living my life, rather than letting the prevention of germs rule my life.\u0026rdquo; \u003cem\u003e\u0026ndash;23 M, S3173363\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"3\" style=\"width: 23px;\"\u003e\n \u003cp\u003e\u003cstrong\u003ePersonally\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 74px;\"\u003e\n \u003cp\u003eProactively manage mental health\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 218px;\"\u003e\n \u003cp\u003e\u0026ldquo;Diving into therapy and learning how to manage stress and all the self-care aspects for sure so I wouldn\u0026apos;t spiral and get sick. \u0026hellip; We need to figure out what I need to do to help myself.\u0026rdquo; \u003cem\u003e\u0026ndash;40 F, S2026162\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 77px;\"\u003e\n \u003cp\u003eRecognize that mental and physical health interrelate\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 213px;\"\u003e\n \u003cp\u003e\u0026ldquo;Everybody that lives with a chronic illness that I\u0026rsquo;ve met and come across can live with bouts of anxiety and depression, myself included.\u0026rdquo; \u003cem\u003e\u0026ndash;39 F, S6509727\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 74px;\"\u003e\n \u003cp\u003eCultivate predictable routines\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 218px;\"\u003e\n \u003cp\u003e\u0026ldquo;I have rhythm to my week that helps me know when I\u0026rsquo;ll have time to rest more or sleep in, compared to times I then have to wake up early. ... I tend to do best if I have a pretty solid schedule.\u0026rdquo; \u003cem\u003e\u0026ndash;25 F, S6561773\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 77px;\"\u003e\n \u003cp\u003eAdjust to new normal\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 213px;\"\u003e\n \u003cp\u003e\u0026ldquo;Everyone\u0026rsquo;s got a different normal in their life, depending what\u0026rsquo;s baseline. So accepting my baseline and \u0026hellip; being appreciative of my baseline.\u0026rdquo; \u003cem\u003e\u0026ndash;30 M, S0500585\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 74px;\"\u003e\n \u003cp\u003eBuild contingency plans\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 218px;\"\u003e\n \u003cp\u003e\u0026ldquo;I try to plan everything. \u0026hellip; Then if I randomly get stuck at a different hotel and I don\u0026apos;t know what\u0026apos;s right around there, then that\u0026apos;s when I\u0026apos;m like, all right \u0026hellip; I already have looked up the updated list.\u0026rdquo; \u003cem\u003e\u0026ndash;38 F, S9033160\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 77px;\"\u003e\n \u003cp\u003eAcknowledge unpredictable and uncontrollable future\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 213px;\"\u003e\n \u003cp\u003e\u0026ldquo;I don\u0026rsquo;t want to think too far ahead because I don\u0026rsquo;t want to get any hopes up. I do still have a deathly fear that I will die like my mother at the age of 40. \u0026hellip; I feel like every time I think too far ahead, I get let down.\u0026rdquo; \u003cem\u003e\u0026ndash;27 F, S8556521\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"2\" style=\"width: 23px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eSocially\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 74px;\"\u003e\n \u003cp\u003ePrepare for conversations with others\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 218px;\"\u003e\n \u003cp\u003e\u0026ldquo;I don\u0026rsquo;t want a pity party from anybody. I think that\u0026rsquo;s helped me master the situation. I know if somebody\u0026rsquo;s going to talk to me about it, I know exactly what I\u0026rsquo;m going to say back.\u0026rdquo; \u003cem\u003e\u0026ndash;27 F, S8556521\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 77px;\"\u003e\n \u003cp\u003eRise above ignorant remarks\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 213px;\"\u003e\n \u003cp\u003e\u0026ldquo;When somebody talks down to you after you\u0026rsquo;ve had something like this, even if it\u0026rsquo;s in a playful way like, \u0026lsquo;Well, you\u0026rsquo;re too young to have that. You\u0026rsquo;re too young,\u0026rsquo; it\u0026rsquo;s hard. \u0026hellip; I don\u0026rsquo;t have to lash out \u0026hellip; You have to calm yourself down and know2 that they don\u0026rsquo;t know the entire situation.\u0026rdquo; \u003cem\u003e\u0026ndash;27 F, S8556521\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 74px;\"\u003e\n \u003cp\u003eChoose where to invest energy\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 218px;\"\u003e\n \u003cp\u003e\u0026ldquo;I learned to just say no to most things. \u0026hellip; Instead of my default being yes \u0026hellip; I just switched my default to no. Then I would take a time to think about it and I would be like, \u0026quot;You know what? Actually, yes, I can do that.\u0026quot; But that preserved what little energy I had.\u0026rdquo; \u003cem\u003e\u0026ndash;39 F, S2644543\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 77px;\"\u003e\n \u003cp\u003eAccept help from others\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 213px;\"\u003e\n \u003cp\u003e\u0026ldquo;Not being able to drive anywhere has been really hard \u0026hellip; I\u0026rsquo;ve made peace with my parents having to drive me places or my friends that pick me up. I\u0026rsquo;ve had to make peace without having a car or that sense of independence.\u0026rdquo; \u003cem\u003e\u0026ndash;24 F, S9633781\u003c/em\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e"},{"header":"Box 1","content":"\u003cp\u003e\u003cimg 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Genetics","twitterHandle":"","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"em","reportingPortfolio":"Springer Hybrid","inReviewEnabled":true,"inReviewRevisionsEnabled":false},"keywords":"adaptation, adjustment, immunodeficiency, rare, chronic, qualitative","lastPublishedDoi":"10.21203/rs.3.rs-5145738/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-5145738/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003eInborn errors of immunity (IEI) are rare heritable disorders of the immune system predisposing to atypical infections, autoimmunity, inflammation, and risk of malignancy. Adaptation is the process of incorporating stressful experiences into one\u0026rsquo;s life; these experiences may include onset of illness, receiving a diagnosis, or suffering without a diagnosis. Poor adaptation is linked to adverse outcomes including psychiatric comorbidities and decreased well-being. Most people with chronic illnesses and rare diseases adapt to their condition with time, but little is known about how this happens. We seek to address this gap in knowledge by investigating features of successful adaptation to IEI over time to help providers facilitate this process among those who struggle. We interviewed 20 self-reportedly well-adapted adults with IEI about their experiences of adaptation. We identified three overarching themes. First, many participants grappled with shame and loss but ultimately integrated their illness into their lives through acceptance, gratitude, and self-compassion. Second, knowledge and choice contributed to participants\u0026rsquo; perceived control, but most participants were also forced to acknowledge the limits of that control when confronting unpredictable symptoms. Finally, social relationships could influence adaptation either positively or negatively. Notably, many participants found meaning in giving back to their communities, especially by educating others about their condition. Ultimately, participants showed that adaptation to life with IEI is complex and ongoing, requiring frequent recalibration to emerging challenges in new life stages. We provide recommendations to providers to help the results of this study shape their discussions with patients.\u003c/p\u003e","manuscriptTitle":"“I am sick, but that’s not all that I am”: patient perspectives on psychological adaptation to inborn errors of immunity","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2024-12-09 07:02:55","doi":"10.21203/rs.3.rs-5145738/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2024-11-05T10:27:26+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2024-10-20T14:15:00+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"287646097480273270226870675988059839317","date":"2024-09-30T08:38:01+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2024-09-26T06:31:30+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2024-09-26T01:45:49+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2024-09-26T01:44:22+00:00","index":"","fulltext":""},{"type":"submitted","content":"Journal of Community Genetics","date":"2024-09-24T13:57:42+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"journal-of-community-genetics","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"jocg","sideBox":"Learn more about [Journal of Community Genetics](http://link.springer.com/journal/12685)","snPcode":"12687","submissionUrl":"https://submission.nature.com/new-submission/12687/3","title":"Journal of Community Genetics","twitterHandle":"","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"em","reportingPortfolio":"Springer Hybrid","inReviewEnabled":true,"inReviewRevisionsEnabled":false}}],"origin":"","ownerIdentity":"2895e376-bf31-40ff-a5bc-ea48ed1063c3","owner":[],"postedDate":"December 9th, 2024","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"published-in-journal","subjectAreas":[],"tags":[],"updatedAt":"2025-01-13T16:01:48+00:00","versionOfRecord":{"articleIdentity":"rs-5145738","link":"https://doi.org/10.1007/s12687-024-00758-z","journal":{"identity":"journal-of-community-genetics","isVorOnly":false,"title":"Journal of Community Genetics"},"publishedOn":"2025-01-06 15:57:28","publishedOnDateReadable":"January 6th, 2025"},"versionCreatedAt":"2024-12-09 07:02:55","video":"","vorDoi":"10.1007/s12687-024-00758-z","vorDoiUrl":"https://doi.org/10.1007/s12687-024-00758-z","workflowStages":[]},"version":"v1","identity":"rs-5145738","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-5145738","identity":"rs-5145738","version":["v1"]},"buildId":"qtupq5eGEP_6zYnWcrvyt","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}