“Trying to go at full speed with the handbrake on”: Living with persistent symptoms after COVID-19, a qualitative interview study

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Given prior evidence of gender-related disparities in acute COVID-19 outcomes and informed by survivorship concept, we examined psychosocial aspects of Long COVID by considering gender-related differences in participants’ narratives. Methods: In this multi-center qualitative study, 27 patients with persistent symptoms following acute COVID-19 and three primary caregivers were interviewed using a semi-structured interview guide across centers in Austria, France and Sweden. Qualitative analysis was informed by Charmaz’s constructivist grounded theory and stratified by self-reported gender. Results: The study cohort consisted predominantly of individuals previously hospitalized for acute COVID-19 assessed at a mean follow-up of 3.4 ± 0.6 years post-infection. Functional constraints coincided with shifts in self-concept prompting retrospective reflection and a search for reassurance predominantly among women; altered roles and responsibilities increased caregiver strain and heightened structural vulnerability in the context of prolonged recovery. Perceived neglect in healthcare prompted both women and men to engage in self-advocacy in aid- and health-management. Survival-oriented positive future outlooks and resilience following near-death-experiences were salient among men. Neglect of health needs was associated with a premature pressure to perform due to caregiving demands among women, and with prioritization of the breadwinner role and masculinity-linked stoic ideals of invulnerability among men. Conclusion: Both patient and caregiver narratives revealed intersecting challenges warranting holistic, coordinated care attentive to systemic barriers, social relations, and gender-related patterns. Long COVID post-viral syndrome qualitative interview study gender-related differences grounded theory survivorship concept Figures Figure 1 Introduction Persistent symptoms lasting at least three months are estimated to occur in roughly 30-40% of acute SARS-CoV-2 infections, a post-infectious condition referred to as Long COVID that first entered medical discourse through patient reports [1, 2]. Clinical manifestations range from isolated mild symptoms to multi-system sequelae that may fluctuate and follow a relapsing-remitting pattern [3]. Risk of Long COVID have been shown to differ by population group, being higher among older individuals, women and gender minorities, racial and ethnic minoritized groups, those with greater socioeconomic deprivation and multimorbidity [4–7]. Intersecting social determinants, when operationalized as cumulative exposure to constraints in healthcare access, housing stability, food security, and discrimination, have likewise been associated with higher risk [8]. Longitudinal studies following acute COVID-19 cases report an overall decline in symptom prevalence over several years [9–11], however, mortality risk and disability-adjusted life years (DALYs) remained elevated above baseline among hospitalized patients three years post-infection [10]. Early modeling-based estimates indicated greater long-term disability and loss of DALYs per infection among females [12], supported by recent evidence that female sex was an independent predictor of delayed symptom resolution [11], even as male sex had previously been identified as a risk factor for greater acute disease severity and COVID-19-associated mortality [13]. In this regard, processes of illness and recovery should not be understood as limited to biological sex , but as emerging at the intersection of psychological, behavioral, social, and cultural dimensions that situate health outcomes within the construct of gender [14]. The pandemic was associated with widening gender disparities, where structural disadvantages including withdrawal from the workforce, uncompensated labor and discontinuation of education disproportionately affected women [15]. Gendered practices in health-related behavior were evident, such as men’s lower adherence to public health precautions and women’s greater salience of COVID-19 and support for restrictive measures [16]. A growing body of Long COVID research reported gender-related patterns [6, 8, 17–19], but qualitative evidence on gendered disease experiences up to three years post-infection, particularly under ongoing diagnostic and prognostic uncertainty, remains sparse. Mullan’s “seasons of survival” (1985) describes temporal processes of cancer survivorship across psychosocial aspects in three “seasons”: acute, extended (a remission period during which individuals adapt to functional limitations in everyday life, including home, community, and work setting), and permanent survival (a stage defined by lasting physical and emotional changes; chronic and secondary effects of health decline and their social consequences) [20]. A commentary on this concept proposed applying this conceptual framework to Long COVID by examining self-care, social functioning, relationships, and financial implications in-depth in future qualitative studies [21]. On this basis, we aimed to assess (i) the above-mentioned psychosocial aspects of lived experiences with persistent symptoms through interviews with patients and their caregivers, with a secondary focus on gender-related differences, and (ii) participants’ theories on why these differences may exist in relation to prevailing gender norms. Methods Study design The qualitative interview component of the “URInary peptidomic patterns of Long COVID syndrome (UriCoV)” project was carried out as a follow-up to the Crit-CoV-U study in Austria (Medical University of Vienna and Kaiser Franz Josef Hospital, Vienna), Sweden (Skaraborgs Hospital, Skövde), and France (Université Paris Cité and Sorbonne University, Paris), between November 2023 and October 2024 [22, 23]. Patients previously hospitalized with severe acute COVID-19 from the Crit-CoV-U cohort were contacted to participate in a follow-up symptom assessment conducted by telephone or post using a standardized questionnaire (manuscript in preparation). Eligibility criteria were consistent with our previously described Delphi Consensus-based definition of PASC [23], and relied on self-reported ongoing symptoms for at least three months following SARS-CoV-2 infection or an established Long COVID diagnosis. On behalf of patients who were unable to participate or declined participation, their primary caregivers were invited to take part (n = 3). Furthermore, we enrolled additional patients attending the outpatient long COVID cardiac care at the Medical University of Vienna (n = 7), where inclusion was primarily based on a clinician-confirmed Long COVID diagnosis. Ethics approval was obtained in accordance with the Declaration of Helsinki via an amendment to the existing protocol of the Crit-CoV-U, granted by the Medical University of Vienna (ethics vote number: 2442/2020) and the institutional review boards of the participating sites (Sweden: Dnr 2023-02474-02 and France: 2023-A01974-41). All participants provided informed consent and could pause or withdraw from voluntary participation at any time without consequences, particularly given the potential for emotional distress, fatigue, or cognitive difficulties when recalling certain memories. Data collection A semi-structured interview guide was developed based on available literature and refined through pilot interviews, with emerging themes informing the final interview questions (see supplementary material 1, Figure S1) [15, 21, 24–28]. Participants were prompted to elaborate on their own and/or their caretaker’s lived experiences and to reflect on gender-related considerations in Long COVID, drawing on sex- and gender-specific prevalence trends in the literature [4, 13]. Of five interviewing researchers with a female-to-male ratio of 4:1, four had medical training (D.G., L.V., M.H., E.S.) and one had a background in humanities and gender studies (E.N.). Peer training in basic interviewing techniques and a brief introduction to grounded theory was provided for interviewers without prior experience in qualitative methods. Interviews were conducted in the local language of each country either by telephone or in-person depending on participant preference and lasted approximately 30–50 minutes. Each interview was audio-recorded, pseudonymized and transcribed verbatim. Transcripts were translated into English prior to analysis, except for interviews conducted in German, which were analyzed in the original language and subsequently translated for reporting purposes using DeepL (DeepL SE, Cologne, Germany). All translated material was reviewed for accuracy, and the authors assume full responsibility for the content of the published article. Data analysis Qualitative data analysis was performed by one researcher (D.G.) using the text sorting technique [29] on Microsoft Excel, informed by principles of Charmaz’s constructivist grounded theory [30]. Initial codes were identified through line-by-line review of transcripts and synthesized into focused codes through constant comparison. Categories were refined based on conceptual similarity and analytical salience through clustering of emerging focused codes into broader domains, supported by memo-writing that attended to context, actions/interactions, and consequences within selected codes. Data collection and analysis proceeded iteratively throughout the study period, with results discussed and reviewed by the interviewing researchers. Age, time of initial COVID-19 infection, and number of vaccinations were collected from the questionnaire and stored in the REDCap database. Gender was recorded during interviews and treated as binary (women/men), as no participants in the present study reported a non-binary or other gender identity. After category development, focused codes were stratified by gender and examined for patterns of similarity, difference, and salience. Results Study population A total of 30 participants were interviewed; 10 in France, where three women caregivers (one spouse and two family members) participated on behalf of the individuals they cared for, 7 in Sweden and 13 in Austria of whom 7 were recruited from the outpatient long COVID cardiac care. Interviews were conducted primarily via telephone, approximately 3.4 ± 0.6 years after the initial SARS-CoV-2 infection. The mean age of participants was 56 ± 12 years, with a 3:2 gender distribution of men to women (a 2:1 men-to-women ratio excluding the caregivers). Participants described persistent, fluctuating, and recurrent symptoms following SARS-CoV-2 infection, some of which were reported in individuals who had experienced severe post-infectious complications such as pulmonary embolism, meningitis, or myocardial infarction necessitating intensive care. One participant had pre-COVID-19 myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The majority was infected between late 2020 and early 2021, prior to widespread vaccine availability, and all but one participant had not received any vaccine dose at the time of initial infection. Participant characteristics are presented in more detail in Table 1 . Main categories Seven interconnected categories emerged from participants' narratives, with secondary analysis examining gender differences (i) (Fig. 1 , Table 2 ). Table 3 presents participants' theories about why gender differences occur in Long COVID (ii); focused codes are detailed in Table S1 and Figure S2. Table 1 Participant characteristics Characteristics N Overall 1 Age 27 56 ± 12 Missing 3 Gender 30 Female patient 9 (30%) Male patient 18 (60%) Female caregiver; female caretaker 1 (3.3%) Female caregiver; male caretaker 2 (6.7%) Country 30 Austria (P18-30) 13 (43%) France (C1-2, P3-8, C9, P10) 10 (33%) Sweden (P11-17) 7 (23%) Time from first infection to interview date (years) 20 3.42 ± 0.58 Missing 10 Date of first infection 20 Before Dec 2020 12 (60%) Dec 2020–Jun 2021 8 (40%) Missing 10 Number of vaccine doses received before infection 19 0 18 (95%) 3–4 1 (5.3%) Missing 11 Number of vaccine doses received in total 22 0 3 (14%) 1–2 6 (27%) 3–4 10 (45%) 5+ 3 (14%) Missing 8 Setting 30 face-to-face 6 (20%) phone 24 (80%) 1 Mean ± SD; n (%); Interview numbers (1–30) were indicated in parentheses. P: Patient; C: Caregiver Panel A: Conceptual diagram illustrating relationships among the seven main analytic categories. Arrows indicate directional relationships between categories, with bidirectional arrows showing reciprocal connections. Panel B: Categories and their corresponding focused codes are displayed by gender salience, which was defined based on analytical relevance rather than frequency of occurrence across the dataset. Women-salient codes are shown in orange, men-salient in blue, and codes salient across genders in grey. Table 2 Main categories with supporting quotes Category Short analytic summary Supporting quotes Illness-Led Disruption and Identity Reconstruction Participants describe emotional aftereffects and ambiguity related to sudden, involuntary shifts, engaging in existential rumination, and often seeking a label or medical validation amid uncertainty “I think I was just unlucky to get infected by my husband who got well quickly. Just a few weeks. And it hit me hard. I think… I have no underlying diseases, I feel that I was completely healthy, always exercised a lot and was active. But after the COVID-19 infection, you felt like this... your wings were clipped, you kind of can't take much, and very often you don't want anything either, you kind of just want to be left alone.” (P11, 41y, F) “Well, it's probably that you have something in your body before and then that you might have been hit by this and then that you might have been hit harder.“ (P16, 54y, F) “They have taken a lot of tests and blood tests and sent me for X-rays, X-rays of the brain and there were also heart examinations. Nothing has turned up. I suspect it is after COVID-19, or, and this is my own theory, covid vaccination, I am vaccinated 3 times.“ (P11, 41y, F) “I wasn't surprised. A lot came together at the time I was ill at the end of 2023. A lot of stress, uncertainty, a life crisis. Several stresses came to a head. It was foreseeable that I would fall ill in some way. In retrospect, not extremely surprising, but the question of why Long COVID.“ (P25, 27y, M) “Sometimes I can spend the whole night searching and reliving the dream when I was in a coma, like I was in another dimension.“ (P7, 67y, M) Social Presence of Illness and Relational Responses How do these involuntary shifts manifest within social support systems and broader society? Patients and caregivers describe adaptations in support structures, such as changes in care dynamics, domestic responsibilities, and experiences of social trivialization or stigma “She's like an anchor in the surf (patient’s wife). She catches me. She's struggling with her own health. We're both a bit worn down. We don't have any options. We don't feel like we belong anywhere. We don't feel understood. We don't get any feedback. They think I'm a crybaby who's always running to the doctor. It's not really uplifting.” (P18, 65y, M) “Few people know. Those who do know have shown interest in what's behind it. I'm open with the people who are important to me. If I'm invited out or they suggest something and I'm not feeling well, I can say that I'm not feeling well, and they understand because of my illness. I get understanding, but in a way, you have to work for it. People don't know anything about the disease (ME/CFS).” (P28, 49y, M) “Yes, well, I haven't gotten much support. Because it's like that, aa, "I've also had COVID-19, it's nothing to complain about", they say if you start talking about it. And then you can stand and talk to someone else a lot, "yes, I know exactly what it's like", they can say. But they can't know that when they haven't had it like I’ve had it. "I was in bed for a week", that's not the same as 8 weeks in the hospital.” (P13, 70y, M) “It’s complicated to understand what a caregiver really is and what they are really experiencing. It’s complicated because people don’t understand how hard it is. They can’t imagine how difficult it is to take care of a sick person. But all caregivers will tell you that.” (C2, F(M)) Cumulative Functional and Structural Vulnerabilities Functional decline becomes a structural matter, intensified by existing systemic gaps and contributing to heightened vulnerability and financial concerns “I feel like I can start working again. But I'm worried that it will knock me down again next winter... I wonder how that works in terms of work and whether I'll end up on welfare at some point. How can I find a job that matches my level of education and be reliably available for it?...I was on part-time reintegration before rehab and said that it would be possible to return to work if I could take longer breaks or retreat to a room where I could lie down and where it was darker. Or structure my work much better than before. He simply said that I wasn't fit for work. If you need to take breaks, you're not fit for work. I struggle with that a bit.” (P24, 39y, F) “I worked remotely…even though you can manage more or less, there are still times when there are scheduled meetings or things, and they don’t always fit well with family life (children). Once a week, I had to go in person and arrange for care. And it was complicated because today I can’t, tomorrow I can. Well, you had to plan three weeks in advance to organize a morning, under normal circumstances... it wasn’t my wish, but given the complexity of the situation, I stopped (working).” (C2, F(M)) “There is a social and financial network for people who are ill. But if you don't have an illness, you don't exist. If you want to register as unemployed, which I have never done in my life, you are immediately available for job placement. That's not possible. It would be counterproductive. If I were looking for work, I would find a job tomorrow because I have qualifications that are in demand. On the other hand, I know that if I'm there for two days and collapse in my current condition, the end of my employment is foreseeable.” (P28, 49y, M) From Constructive Coping to Practical Management Participants adapt emotional coping and disease-management behaviors, with attitudes such as a “fighting spirit,” reframing the illness, and cultivating gratitude, collectively interpreted as positive mechanisms “As soon as I realize that I can't do it anymore. And it helps to stop wanting to. For me, the term “meditative walking” fits very well. When I was feeling better again, I might have walked 700 m or 1 km at most. But extremely slowly. Like an old person with a rollator, at that pace. I tried to find a way to still get something out of it. It's incredibly boring to walk so slowly. I then listened to a podcast or music and discovered interesting facades in side streets in the area. I managed to adapt well to the slowness, so that I felt good and had the opportunity to enjoy it.” (P24, 39y, F) “There are other people too… in the past it was ‘gasen i botten’ all the time, but it also left its mark. That’s why my heart ended up the way it did. It’s hard to say, but it acted like a brake. Now I can value things more and plan better and take it more easily and such, like other people do. …When others sat and thought about what to do, I was already out working and was almost done (laugh).” (P15, 67y, M) “Many friends say that they don't understand how I can be so social and in a relatively good mood even though there's been so much shit. I try to stay above the surface of the water.” (P14, 68y, M) “I'm my first therapist already. The doctor isn't in second place. He's there to support me.” (P3, 71y, M) “It's nice to find like-minded people. There are Facebook etc. ME/CFS self-help groups. For me personally, this is of little use because the illness is very individual. What is right for me may be wrong for someone else. At the same time, many have a victim role. That is also understandable. But it quickly leads to collective complaining in these forums. That is certainly a catalyst for many. People want to communicate, but for me it's counterproductive because it drags me down. It has no sense of purpose.” (P28, 49y, M) Internalized Norms and Self-Imposed Care Barriers Tendencies to avoid reflection, downplay or normalize symptoms, not wanting to be a burden stemming from internalized social norms regarding identity, social roles, and responsibilities “You know, I feel that they can't help me anyway, so why should I tell them? For them to feel sorry for me? You don't get help anyway, and I don't want pity.” (P11, 41y, F) “I refuse to have Long COVID. I've always been very optimistic and forward-looking my whole life. I think it's just that I'm almost 75 years old now. I don't think I'm damaged by Covid. I don't want to believe that.” (P26, 75y, F) “Yes, and there are probably several people who are in the same situation as me, who don't want others to know about it. I'm a bit of a sneaky covid patient. Like I said, no one at work, only my family, my husband, not even my children know about it. They just know that mom is tired, I don't want to tell people about it.” (P11, 41y, F) “It's more difficult at work because I feel guilty about being absent more often than usual. That's not really like me.” (P21, 42y, F) “My husband hesitated for longer (to seek medical care). We have an architecture firm and I was a school principal at the time. There was a lot to do. He left a little later. He couldn't stand it at home anymore either.” (P20, 66y, F) “You don't always want to burden others and ask questions. That's why you always make sure that you manage everything yourself.” (P29, 53y, M) Self-Advocacy Amid Institutional Neglect and Fragmentation Perceptions of insufficient, fragmented care, lack of follow-ups and concerns about public health measures forcing self-advocacy “..after I got out (of the hospital), we were completely abandoned…We were left in the lurch and given no information about what to do if we felt bad, where to go. We had to research it all ourselves. By the time we found out, it was already too late to really take advantage of it. It should have been much faster. They should have taken better care of people.” (P27, 51y, M) “Now I can't even get an appointment with the doctor, I've been trying to book an appointment since the beginning of February (now it's mid-March), and it says in the medical record that I called. But now it's almost embarrassing to call and nag. I think it's really to just accept the situation. I feel helpless…I feel like the health center is kicking me around like a football, "you can sort of fend for yourself, it's nothing dangerous". (P11, 41y, F) “My family doctor always took me seriously, but other specialists—the cardiologist didn't attribute it to psychological factors, but I've often experienced that with male doctors. It was particularly extreme in rehab. He had no understanding of Long COVID and told me that perhaps I was exhausted after physical exertion because I was overweight and not used to exercising. I'm a bit heavier, but I also have quite a bit of muscle. That's nonsense. He told me I shouldn't live alone because I need emotional relaxation. He said it would be best for me to live with someone of the opposite sex.” (P24, 39y, F) “It's up to each individual to decide whether to get tested. But I think it's irresponsible not to get tested and still participate in social life, i.e., going to a restaurant, a soccer stadium, or a concert, when I know full well that I may be contagious.” (P30, 48y, M) Desired System Improvements and Supports Aiding Recovery Participants commonly call for a healthcare professional to monitor from a “bird’s-eye” perspective and assist in coordinating care. More attentive, up-to-date, tailored care is needed “I needed someone to manage things for me, like doctor's appointments and where I could go and what tests I could have done…Having to do that research alone, in a state of illness where you are exhausted, there is an urgent need for something in the healthcare system that takes that burden off you.” (P24, 39y, F) “It should also be made clear that natural medicine and herbal teas are sometimes very good, but you can't beat cancer with them. You have to go to conventional medicine. More and more people don't understand that and then the diseases spread…. Medicine should, and does, work closely with science and provide much more information. What is happening with the anti-vaccination movement and the horrible nonsense of attacking nurses - the fact that something like this can happen is simply terrible. We need to educate people on a permanent basis.” (P26, 75y, F) “I now know people who have COVID-19 but simply don't get tested because it's too expensive. Their primary concern is the cost. Testing has been abolished, and now you have to pay for it yourself. As a result, no one does it anymore.” (P30, 48y, M) “When you come out of something like that, you need to be accompanied, to have people to talk to us, to explain things to us. I was searching alone... on the internet to find answers alone. But then you tell me this thing on the internet, is it true? Is it not true? We don't have a professional who can explain it to us.” (P15, 67y, M) P: Patient; C: Caregiver; F: Female; M: Male; F(M): Female caregiver, Male patient Table 3 Participant theories on gender differences Explanatory domain How Participants Explained Gender Differences in Long COVID Gender bias in medicine “It's difficult to compare men and women medically because drugs have been tested for men and women often get the wrong dose or the wrong medication. It's like comparing apples and oranges.” (P28, 49y, M) “I believe that in medicine, at least among certain older male doctors, women are more easily dismissed as having psychological issues. I would say that women are less likely to be believed when they say that exhaustion is really the cause of their illness. That with women, people are perhaps more likely to say that it's psychological, perhaps because of the multiple stresses they face. Perhaps this is less the case with men. That's a cliché.” (P24, 39y, F) Gendered occupational segregation “The type of work you do also makes a difference. I met a primary school teacher. All those who have to be 100% present at work in some way. When I work in an office, I can take a ten-minute break. But a teacher in an elementary school class can't leave the classroom for five minutes and close her eyes. You have to take that into account too. What jobs do women have and what jobs do men have? If you assume that women generally have more social jobs, nursing or something like that. If you take that as a given, and there are studies on this, then I can imagine that women have more problems with things like that, including keeping their jobs.” (P24, 39y, F) “But perhaps it also depends on your lifestyle. Smoking. Drinking. If men do heavier work, that has a different effect. A man working in construction has to exert himself more physically.” (P21, 42y, F) Gendered social norms “I can think that women may have more responsibilities when they are part of a family. Or they may take on more responsibility in the social structure. After an acute illness, they may feel more pressure to be physically active sooner.” (P25, 27y, M) “Nowadays it's still mainly women who take on the care work and also have to look after children at the same time. If I'm not feeling well, I just can't manage to tidy up for a week or two. Then it only bothers me. But if you have a family and are responsible for them, or feel responsible for them, then it's really very stressful. ‘With a child, you can't just say, I'm sick, I can't do it right now. ..I have met more women with Long COVID than men. All of the women with Long COVID that I have met deal with it in the way that I would stereotypically expect men to. “I have to get through this. I have to keep working. I have to get back into shape.”’ (P24, 39y, F) “I believe that women, especially when they are part of a family unit, are used to taking care of others. They may see themselves in the role of a nurturing mother and forget about themselves a little in this situation. Perhaps they push the first signs of illness aside because they put their family first. Perhaps they overlook the first signs and are more likely to develop Long COVID. Without resorting to stereotypes, there are plenty of men who have a cold and are deathly ill, while their wives with a fever of 39°C take care of the family. This also has a lot to do with the double burden of family and career that women face. I believe there are many stress factors that go beyond the biological.” (P28, 49y, M) “Or maybe men don't complain as much. I don't know if really fewer men have Long Covid than women, or they have to work and maintain the family.” (P22, 53y, F) “I tell myself that we men are much more sensitive to diseases, to symptoms, etc., because we give it our all. They don't take the trouble, for example, to exercise or to have a good diet” (P10, 62y, M) “Sometimes I joke that men don't love themselves because they treat themselves so badly. Drinking, smoking, and being hysterical. They don't look after themselves because they believe they are godlike and nothing can happen to them.” (P26, 75y, F) Differing social responses and coping mechanisms “I believe that women are more likely to seek advice from friends and deal with the issue openly. Men would be more likely to deal with it discreetly and shut themselves away at home. They would isolate themselves and withdraw. That's how I would stereotypically think. But I think women would be more likely to confide in their friends and talk openly about illnesses” (P28, 49y, M) “My girlfriend and my mother were very understanding. I would expect a man, myself, if a woman in a Long COVID environment didn't really believe her at first and say: "Go for a walk. You'll be fine." That's what I've sometimes heard from men around me. There are definitely differences. I've found that the women around me are much more understanding and the men tend to think it could be something else. That it's psychological, that you're just imagining it, that you just have to be a bit more active.” (P25, 27y, M) P: Patient; F: Female; M: Male. Illness-Led Disruption and Identity Reconstruction COVID-19 was experienced as a disruption to patients' life trajectory and sense of self, voiced through metaphors such as “having their wings clipped”, being “back to square one” or “down at the bottom more than ever before”. Sudden physical changes reoriented participants toward survival and constrained their ability to attend to concerns beyond illness; former activities lost meaning as priorities shifted toward self-care or, for some, caring for others: “I slowed down considerably. Shopping, cooking, taking care of myself, getting to the pharmacy or arranging for someone else to do it for me - that filled my days. Everyday life consisted of taking care of the most necessary things.” (P24, 39y, F) Negative future outlooks articulated as “not having a path forward” were discussed in relation to fears of non-recovery, death, recurrence of physical limitations, and symptoms resembling post-traumatic stress. Uncertainty arising from limited medical knowledge and clinical validation heightened the need for reassurance and sense-making, taking the form of existential questioning (“why me?” reflections) and spiritual reframing predominantly among women, while both genders sought external information, weighed competing explanations, and developed personal illness interpretations to cope with causal ambiguity: “Psychologically, it's just that you want to do things, but you can't anymore. You try to run at full speed with the handbrake on” (P28, 49y, M) Social Presence of Illness and Relational Responses Illness-related disruptions led to adjustments in the distribution of roles and responsibilities: While partners initially compensated for functional limitations through delegation of chores and shared financial burden during periods of work inability, prolonged recovery periods were associated with increased caregiver strain, with one ultimately withdrawing from the workforce to care for her spouse and children. Elderly care was undertaken by female family members; their emotional strain was linked to the rarely appreciated and uncompensated labor. Few participants described “having to work” for recognition by educating others about the disease and justifying their limitations, as they were often not seen or understood when unable to meet expectations in the absence of visible illness: “Contact is quite reduced. But in itself, it's difficult because people don't know what I have. I look healthy, I'm young, and when I'm outside, I don't look like a corpse. So it's difficult when I tell people I can't go there because I'm sick. You can't tell by looking at me.” (P25, 27y, M) While soliciting support by verbalizing vulnerabilities elicited favorable social responses, experiences of trivialization intensified feelings of isolation already present due to restricted social participation. Relational closeness was further strained by fears of reinfection; in contrast, shared illness experiences coincided with increased empathy, a moral commitment to supporting others, and a sense of responsibility to contribute to research, even when recalling certain memories was emotionally difficult. Cumulative Functional and Structural Vulnerabilities Functional limitations and reduced participation in social life gave rise to heightened concerns about future financial security and potential dependence on welfare. Work norms requiring stable capacity and limited reintegration policies poorly accommodated recurrent, unpredictable symptoms, resulting in difficulties maintaining pre-COVID-19 professions. “The employer put up with it for a long time. There's hardly any employer who would keep you on for three years even though you're on sick leave. It worked out well. But at some point, the question arose as to what we would do if things continued like this. It costs the employer money. So we parted ways by mutual agreement.” (P29, 53y, M) From Constructive Coping to Practical Management Coming to terms with impaired functioning was described in relation to cultivating gratitude through comparisons with poorer outcomes, redefined future expectations, discontinuing efforts to “push” improvement, and recognizing unintended gains: “Sometimes I wonder how much of those things I do now, if I hadn't gotten COVID-19, I probably would have exercised just as much, and I wouldn't have had time to do the other things that I do now. We have started a business, I have been working with that, in addition to my regular job, filling my time with such things. If I hadn't gotten ill from COVID-19, I think, for example, that I wouldn't have run a business on the side.” (P12, 55y, M) Individuals expressing what we interpreted as a fighting spirit or an “I manage” attitude (predominantly men), actively developed strategies to “stay above the surface of the water”, such as cautious pacing by goal setting, anticipatory avoidance of being alone in vulnerable situations, and deviating from practices that no longer seemed beneficial. One male patient questioned the usefulness of self-help groups given the heterogeneity of illness experiences and the general tendency toward collective complaining. Internalized Norms and Self-Imposed Care Barriers Internalized social pressures were linked to struggles in acknowledging illness, shifting towards detachment and deliberate disengagement from retrospective reflection framed as “punitive” (greater tendency in men). Desire to appear strong was evident in impression management efforts to avoid pity or unwanted attention, suppression of personal needs, downplaying of symptoms and tendency to attribute limitations to alternative explanations: “When people see me on the street, I don't like to be asked about my appearance. That's why I dress nicely in the morning, and when I go out and take a taxi to go shopping, which is already a strain for me, I get ready as quickly as possible. No one would ever guess that I have a problem.” (P28, 49y, M) Self-Advocacy Amid Institutional Neglect and Fragmentation Navigating fragmented healthcare without clear guidance left participants frustrated and feeling abandoned, describing themselves as "wandering around" and "being kicked around like a football": “I got so frustrated, being sent around to different clinics, it becomes like a vicious circle, instead of getting help… It feels a bit like you have to be healthy to be sick, to have the energy to get help when you're sick. One can't manage to call and tell the same thing to different people if you know you won't get help anyway. Then you think, ‘Alright, then I'll have to fend for myself then’.” (P11, 41y, F) Normalization and dismissal of persistent symptoms in healthcare settings were prominently experienced by women, where clinical assessments emphasized perceived functionality over patients’ narratives. Repeated medical consultations without definitive results, often entailing out-of-pocket expenses, introduced an additional barrier to care access, including rigid documentation requirements for aid eligibility and physicians not keeping pace with emerging conditions: “I get irritated every now and then when I go to the doctors and nobody gets anything done. You have to see where you can get your money from. There's rehab money from the pension insurance. Then you get assessed and have to go to a doctor who is 70 years old and says to your face: ‘I'm already that old. I'm no longer interested in corona. But I have to write a report about it.’ What are you supposed to do there? The doctor gets paid for the report, even though he's not even competent. During these days and weeks, you get upset, angry and just want to sh*t on it.” (P29, 53y, M) The relaxation of public health measures was interpreted by one participant as a deliberate strategy of allowing widespread infection. Masks were framed by another as “dust masks,” and one participant argued that the negative effects of pandemic control measures, particularly restrictions affecting children’s ability to attend school in person, outweighed the benefits for transmission control. These views were expressed exclusively by men. Desired System Improvements and Supports Aiding Recovery Participants wished for better physician awareness of post-infectious conditions, with one noting this would have prompted earlier recognition and action, and another describing feeling like "fighting a losing battle" with unfamiliar physicians who raised eyebrows at ME/CFS: “ I would have liked to see a certain level of awareness. If various tests have been carried out and nothing has been found, and the patient says that they have been ill several times recently, it should also be pointed out that there are conditions such as Long COVID or other post-viral conditions, and that they should find out whether the symptoms match these conditions . If I had been made aware earlier by a professional that it could be Long COVID, and not just by my family, I might have paid a little more attention and perhaps taken more care of myself earlier.” (P25, 27y, M) They expressed strong needs for multidisciplinary care allowing general practitioner oversight and post-discharge follow-up. Female patients valued attentiveness where they could be “read like an open book”; a male patient sought better integration of psychological support within medical care; participants overall felt encouraged by advances in research, and desired better structured, more accessible care. “You find yourself with a particular practitioner... You talk about a specific pathology, and they handle it, whereas, well, it should be... COVID-19 should be a chain.” (P3, 71y, M) Discussion We studied persistent symptoms following SARS-CoV-2 infection comprising severe post-infectious complications in a multi-national cohort of 27 patients and three caregivers at 3 years of follow-up, with an analytical focus on how gender shapes survivorship, lived experiences and perceptions. Most but not all participants depicted acute COVID-19 and its aftereffects as a turning point in their life courses, accompanied by a rupture of implicit assumptions regarding self-concept, capacity and anticipated future best described by Bury’s term (1982) of “biographical disruption” [ 31 , 32 ]. Perceived disruption of everyday life, together with causal ambiguity surrounding an emerging disease, appeared to elicit both shared and, at times, distinct behavioral patterns across genders. Efforts to construct meaning around experiences and to seek reassurance dominated in women’s accounts; men commonly framed questioning the “why” as unhelpful and, for some, as punitive, the deliberate avoidance of retrospective reflection was interpreted as a self-protective strategy aimed at preserving emotional stability. Changes in social roles and responsibilities involved increased dependence on partners and family members for care, finances, aid- and health-management, being exposed to cumulative structural vulnerabilities as the recovery period extended (e.g., expiration of sick-leave entitlements amplifying financial insecurity, withdrawing from work due to caregiving demands). Challenges arising from navigating fragmented care and emerging physician awareness reinforced self-advocacy, whereby patients closely followed research advancements or participated in research, became more attuned to bodily signals, and proactively engaged in well-being practices. Conversely, social norms created additional barriers to care by delaying disease acknowledgment through symptom downplaying and by reducing recognition and support via concealment in social interactions. Participants’ reflections on gender-related differences in long COVID outcomes point to perceived mechanisms whereby competing caregiving demands, compounded by the dual burden of uncompensated care and employment obligations, may delay recognition of early symptoms and pressure women to resume functioning prematurely. Related barriers to healthcare access were widely observed during the pandemic, particularly in low-income settings and in contexts where caregiving and domestic responsibilities are disproportionately borne by women [ 33 , 34 ]. Long COVID was described as an intervening factor within these roles among individuals with parenting tasks by another study, which, in turn, may lead to disruptions in self-concept and heighten pressures to re-engage with pre-COVID-19 roles [ 35 ]. On the other hand, men’s poorer outcomes have been associated with later engagement with healthcare, described in relation to prioritization of breadwinner roles, norms of endurance and stoicism, and stereotypical beliefs around male self-neglect. A pandemic-era qualitative study from Brazil examining normative patterns of masculinity described invulnerability beliefs in relation to denial of COVID-19 and resistance to control measures, as well as perceived threats to breadwinner identity [ 36 ]; the latter resonated with identity-related tensions articulated by participants. Accounts of affective detachment, self-descriptions of being “unaffected” as a means of preserving dignity, slowing down framed as personal choice rather than necessity, not wanting to look "powerless" through complaint, and more critical appraisals of pandemic control measures among men collectively reflect orientations aligned with stoic norms. However, resilient attitudes and adaptive coping behaviors centered on energy management were more salient in men’s accounts, often emerging following near-death experiences (NDE) related to severe COVID-19. Emphasis on survival over long-term consequences was described in relation to spiritual coping, feelings of gratitude culminating in optimistic future outlooks. Given the higher acute severity of COVID-19 among men in our cohort, accounts following near-death experiences were read in relation to themes described in NDE research, including “higher self-esteem, greater focus on living in the present, and a view of death as a transition rather than absolute annihilation” [ 37 ]. In contrast, estimates of morbidity burden in Long COVID suggested greater long-term disability and loss of DALYs per infection among females [ 12 ]. Accordingly, the accumulation of long-term functional impairment with existing or higher exposure to structural vulnerabilities may manifest as pessimistic future orientations and heightened illness-related concerns, constraining their coping capacity and self-management of symptoms. Recovery was narrated as a relational process shaped through interactions with others. Initial illness episodes elicited empathy and support within social circles; later ones were increasingly normalized or dismissed as infection became widespread. In parallel, anxiety regarding the exacerbation of physical constraints and reinfection continued to limit participation in everyday life. In the workplace, fear of physical collapse translated into increased absences, triggering guilt and shame; repeated breaks for pacing purposes were not tolerated long-term, taking the form of assessments of being “unfit for work”. The discrepancy between functional capacity and institutional demands was perceived as most limiting in socially intensive occupations requiring sustained activity and cognitive engagement, which were thought to be associated with a greater risk of employment termination. Long COVID risk has been shown to be higher in education, healthcare, and other patient-facing roles, sectors in which women are overrepresented [ 18 ]. In a recent study from Germany on the healthcare sector and social services, more than three quarters of employees with work-related COVID-19 reported post-COVID, while approximately half experienced diminished work capacity [ 38 ]. Predominantly women appeared to encounter dismissal in healthcare settings, with concerns readily framed as psychological or lifestyle-related followed by referrals to psychiatric care, echoing participants’ own theories on gender-related biases in healthcare and existing literature [ 28 , 39 ]. Ortona et al. argued that this pattern may emerge from women’s greater awareness of their bodies and earlier symptom reporting, and in some cases finding expression in prevailing gendered normative assumptions [ 17 ], presented as given by a woman patient in the present study: “men tend to complain less”, (P22, 53y, F; Table 3 ) . The constellation of experiences revealing substantial barriers to access to care, including trivialization of symptoms in both social and healthcare settings, limited or absent financial support, and the need to continuously advocate for care three years after the initial infection, raises concern. Occupational segregation draws attention to the need for work reintegration policies that consider gender, as well as improved access to financial and institutional support including childcare, particularly when return to work is not feasible. Future policies must address these needs by improving public visibility and awareness of post-infectious complications, and through implementation of a structured, longitudinal, multidisciplinary care that also accounts for gender differences and social support pathways. Limitations Patients who required hospital care due to severe acute infection with SARS-CoV-2 comprised the majority; accordingly, the cohort composition deviated to a certain extent from broader Long COVID populations with milder COVID-19 courses. Another limitation was the unequal gender distribution (a men-to-women ratio of 3:2) and divergence from that reported in epidemiological studies of Long COVID (higher prevalence among women) [ 4 – 6 ], which might have amplified selection bias and limited transferability by potentially overrepresenting men’s narratives. Furthermore, experiences beyond binary gender categories were not represented in this study. Enrollment of patients from the outpatient long COVID cardiac care may have introduced additional heterogeneity in data sources (self-reported diagnosis versus clinician-confirmed) and limitations related to missing information; prior hospitalization, vaccination status, and the timing of the initial COVID-19 infection was unavailable for this additional group of patients. No data on racial/ethnic background, religion and socioeconomic status were collected. Lastly, country-specific sub-cohort analyses were not undertaken, limiting the ability to examine potential culture-dependent differences across participating countries. Conclusion Qualitative analysis indicated that recurrent episodes of functional constraints in Long Covid shaped self-concept by enforcing modifications in roles and responsibilities, heightening vulnerability to gaps in structural safety nets and displacing additional strain onto family or partnership relations. In response to an emerging disease lacking a definitive medical label, women participants pursued explanations for their symptoms and illness course; narratives of dignity and emotional stability were linked to resistance to illness identity across genders, and to avoidance of past-oriented reflection among men. Survival-based outlooks and resilience was described in relation to NDE, while perceived neglect from the healthcare system compelled self-advocacy and self-management of disease. Participants’ hypotheses on gender differences in long COVID outcomes reflected implicit expectations around gender roles and norms shaping responses to illness. Intersecting challenges call for coordinated, holistic care attentive to systemic barriers, social relations, and gendered patterns. Abbreviations Disability-adjusted life years (DALYs); Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS); Near-death experiences (NDE); Post-acute sequelae of SARS-CoV-2 (PASC); URInary peptidomic patterns of Long COVID syndrome (UriCoV) Declarations Data Supplement Supplementary material 1. UriCoV Interview Guide; Figure S1. Preliminary themes derived from pilot interviews; Figure S2. Prominence of focused codes by gender; Table S1. Focused codes and exemplary conceptual processes Ethics approval and consent to participate: Ethical approval was provided the Medical University of Vienna (ethics vote number: 2442/2020) and the institutional review boards of the participating sites (Sweden: Dnr 2023-02474-02 and France: 2023-A01974-41). Consent for publication: Not applicable. Availability of data and materials: Because the study is based on qualitative interviews that may contain information enabling participant identification, the datasets generated and analyzed during this study are not publicly accessible. Additional data may be obtained from the corresponding author upon reasonable request and subject to appropriate ethical considerations. Competing interests: All authors declare that they have no competing interests. Funding : This work was supported by the FWF [grant number I 6464]; by the Sweden’s innovation agency (VINNOVA) [grant number 2022-00542]; and the French National Research Agency [Agence Nationale de la Recherche (ANR)] under the grant ANR-22-PERM-0014. Authors' contributions: DG: Conceptualization, formal analysis, investigation, project administration, visualization, writing – original draft, ES: Investigation, writing – review and editing, EN: Investigation, ED: Project administration, resources, MM: Project administration, resources, writing – review and editing, BP: Project administration, resources, writing – review and editing, LV: Investigation, AK: Investigation, JS: Project administration, resources, AE: Supervision, writing – review and editing, MG: Resources; UK: Supervision, writing – review and editing, MH: Supervision, conceptualization, investigation, project administration, funding acquisition. Acknowledgements: We thank all interview participants for generously sharing their time and experiences. We further acknowledge the collaboration with the outpatient long COVID cardiac care at the Medical University of Vienna. References Chen C, Haupert SR, Zimmermann L, Shi X, Fritsche LG, Mukherjee B. 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Hecking","email":"data:image/png;base64,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","orcid":"","institution":"Medical University of Vienna","correspondingAuthor":true,"prefix":"","firstName":"Manfred","middleName":"","lastName":"Hecking","suffix":""}],"badges":[],"createdAt":"2026-03-12 10:24:17","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-9103579/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-9103579/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":107709385,"identity":"b6562e53-f3e7-4969-92d4-5c0473caa95b","added_by":"auto","created_at":"2026-04-24 09:35:39","extension":"png","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":366644,"visible":true,"origin":"","legend":"\u003cp\u003eConceptual model and categories by gender salience\u003c/p\u003e\n\u003cp\u003ePanel A: Conceptual diagram illustrating relationships among the seven main analytic categories. Arrows indicate directional relationships between categories, with bidirectional arrows showing reciprocal connections. Panel B: Categories and their corresponding focused codes are displayed by gender salience, which was defined based on analytical relevance rather than frequency of occurrence across the dataset. Women-salient codes are shown in orange, men-salient in blue, and codes salient across genders in grey.\u003c/p\u003e","description":"","filename":"1.png","url":"https://assets-eu.researchsquare.com/files/rs-9103579/v1/d337ee16e0b579943d2ccec8.png"},{"id":107711556,"identity":"52816fdb-8438-414a-a7ab-0c6e929b843c","added_by":"auto","created_at":"2026-04-24 09:45:47","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":670133,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-9103579/v1/3e27da24-c550-4f1f-ba2d-386fece5ef10.pdf"},{"id":107708418,"identity":"0c76199a-b2be-4764-a942-f09dab3e0d44","added_by":"auto","created_at":"2026-04-24 09:26:59","extension":"doc","order_by":0,"title":"","display":"","copyAsset":false,"role":"supplement","size":404480,"visible":true,"origin":"","legend":"","description":"","filename":"HandbrakeonDraft1suppsub.doc","url":"https://assets-eu.researchsquare.com/files/rs-9103579/v1/379d7e47e639a69921e8d4da.doc"}],"financialInterests":"No competing interests reported.","formattedTitle":"“Trying to go at full speed with the handbrake on”: Living with persistent symptoms after COVID-19, a qualitative interview study","fulltext":[{"header":"Introduction","content":"\u003cp\u003ePersistent symptoms lasting at least three months are estimated to occur in roughly 30-40% of acute SARS-CoV-2 infections, a post-infectious condition referred to as Long COVID that first entered medical discourse through patient reports [1, 2].\u0026nbsp;Clinical manifestations range from isolated mild symptoms to multi-system sequelae that may fluctuate and follow a relapsing-remitting pattern [3]. Risk of Long COVID have been shown to differ by population group, being higher among older individuals, women and gender minorities, racial and ethnic minoritized groups, those with greater socioeconomic deprivation and multimorbidity [4\u0026ndash;7]. Intersecting social determinants, when operationalized as cumulative exposure to constraints in healthcare access, housing stability, food security, and discrimination, have likewise been associated with higher risk [8].\u003c/p\u003e\n\u003cp\u003eLongitudinal studies following acute COVID-19 cases report an overall decline in symptom prevalence over several years [9\u0026ndash;11], however, mortality risk and disability-adjusted life years (DALYs) remained elevated above baseline among hospitalized patients three years post-infection [10]. Early modeling-based estimates indicated greater long-term disability and loss of DALYs per infection among females [12], supported by recent evidence that female sex was an independent predictor of delayed symptom resolution [11], even as male sex had previously been identified as a risk factor for greater acute disease severity and COVID-19-associated mortality [13]. In this regard, processes of illness and recovery should not be understood as limited to biological \u003cem\u003esex\u003c/em\u003e, but as emerging at the intersection of psychological, behavioral, social, and cultural dimensions that situate health outcomes within the construct of \u003cem\u003egender\u003c/em\u003e [14]. The pandemic was associated with widening gender disparities, where structural disadvantages including withdrawal from the workforce, uncompensated labor and discontinuation of education disproportionately affected women [15]. Gendered practices in health-related behavior were evident, such as men\u0026rsquo;s lower adherence to public health precautions and women\u0026rsquo;s greater salience of COVID-19 and support for restrictive measures [16]. A growing body of Long COVID research reported gender-related patterns [6, 8, 17\u0026ndash;19], but qualitative evidence on gendered disease experiences up to three years post-infection, particularly under ongoing diagnostic and prognostic uncertainty, remains sparse.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eMullan\u0026rsquo;s \u0026ldquo;seasons of survival\u0026rdquo; (1985) describes temporal processes of cancer survivorship across psychosocial aspects in three \u0026ldquo;seasons\u0026rdquo;: acute, extended (a remission period during which individuals adapt to functional limitations in everyday life, including home, community, and work setting), and permanent survival (a stage defined by lasting physical and emotional changes; chronic and secondary effects of health decline and their social consequences) [20]. A commentary on this concept proposed applying this conceptual framework to Long COVID by examining self-care, social functioning, relationships, and financial implications in-depth in future qualitative studies [21]. On this basis, we aimed to assess (i) the above-mentioned psychosocial aspects of lived experiences with persistent symptoms through interviews with patients and their caregivers, with a secondary focus on gender-related differences, and (ii) participants\u0026rsquo; theories on why these differences may exist in relation to prevailing gender norms.\u003c/p\u003e"},{"header":"Methods","content":"\u003cp\u003e\u003cstrong\u003eStudy design\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe qualitative interview component of the “URInary peptidomic patterns of Long COVID syndrome (UriCoV)” project was carried out as a follow-up to the Crit-CoV-U study in Austria (Medical University of Vienna and Kaiser Franz Josef Hospital, Vienna), Sweden (Skaraborgs Hospital, Skövde), and France (Université Paris Cité and Sorbonne University, Paris), between November 2023 and October 2024 [22, 23]. Patients previously hospitalized with severe acute COVID-19 from the Crit-CoV-U cohort were contacted to participate in a follow-up symptom assessment conducted by telephone or post using a standardized questionnaire (manuscript in preparation). Eligibility criteria were consistent with our previously described Delphi Consensus-based definition of PASC [23], and relied on self-reported ongoing symptoms for at least three months following SARS-CoV-2 infection or an established Long COVID diagnosis. On behalf of patients who were unable to participate or declined participation, their primary caregivers were invited to take part (n = 3). Furthermore, we enrolled additional patients attending the outpatient long COVID cardiac care at the Medical University of Vienna (n = 7), where inclusion was primarily based on a clinician-confirmed Long COVID diagnosis. Ethics approval was obtained in accordance with the Declaration of Helsinki via an amendment to the existing protocol of the Crit-CoV-U, granted by the Medical University of Vienna (ethics vote number: 2442/2020) and the institutional review boards of the participating sites (Sweden: Dnr 2023-02474-02 and France: 2023-A01974-41). All participants provided informed consent and could pause or withdraw from voluntary participation at any time without consequences, particularly given the potential for emotional distress, fatigue, or cognitive difficulties when recalling certain memories.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eData collection\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eA semi-structured interview guide was developed based on available literature and refined through pilot interviews,\u0026nbsp;with emerging themes informing the final interview questions (see supplementary material 1, Figure S1) [15, 21, 24–28]. Participants were prompted to elaborate on their own and/or their caretaker’s lived experiences and to reflect on gender-related considerations in Long COVID, drawing on sex- and gender-specific prevalence trends in the literature [4, 13]. Of five interviewing researchers with a female-to-male ratio of 4:1, four had medical training (D.G., L.V., M.H., E.S.) and one had a background in humanities and gender studies (E.N.). Peer training in basic interviewing techniques and a brief introduction to grounded theory was provided for interviewers without prior experience in qualitative methods. Interviews were conducted in the local language of each country either by telephone or in-person depending on participant preference and lasted approximately 30–50 minutes. Each interview was audio-recorded, pseudonymized and transcribed verbatim. Transcripts were translated into English prior to analysis, except for interviews conducted in German, which were analyzed in the original language and subsequently translated for reporting purposes using DeepL (DeepL SE, Cologne, Germany). All translated material was reviewed for accuracy, and the authors assume full responsibility for the content of the published article.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eData analysis\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eQualitative data analysis was performed by one researcher (D.G.) using the text sorting technique [29] on Microsoft Excel, informed by principles of Charmaz’s constructivist grounded theory [30]. Initial codes were identified through line-by-line review of transcripts and synthesized into focused codes through constant comparison. Categories were refined based on conceptual similarity and analytical salience through clustering of emerging focused codes into broader domains, supported by memo-writing that attended to context, actions/interactions, and consequences within selected codes. Data collection and analysis proceeded iteratively throughout the study period, with results discussed and reviewed by the interviewing researchers. Age, time of initial COVID-19 infection, and number of vaccinations were collected from the questionnaire and stored in the REDCap database. Gender was recorded during interviews and treated as binary (women/men), as no participants in the present study reported a non-binary or other gender identity. After category development, focused codes were stratified by gender and examined for patterns of similarity, difference, and salience.\u0026nbsp;\u003c/p\u003e"},{"header":"Results","content":"\u003cdiv id=\"Sec6\" class=\"Section2\"\u003e \u003ch2\u003eStudy population\u003c/h2\u003e \u003cp\u003eA total of 30 participants were interviewed; 10 in France, where three women caregivers (one spouse and two family members) participated on behalf of the individuals they cared for, 7 in Sweden and 13 in Austria of whom 7 were recruited from the outpatient long COVID cardiac care. Interviews were conducted primarily via telephone, approximately 3.4\u0026thinsp;\u0026plusmn;\u0026thinsp;0.6 years after the initial SARS-CoV-2 infection. The mean age of participants was 56\u0026thinsp;\u0026plusmn;\u0026thinsp;12 years, with a 3:2 gender distribution of men to women (a 2:1 men-to-women ratio excluding the caregivers). Participants described persistent, fluctuating, and recurrent symptoms following SARS-CoV-2 infection, some of which were reported in individuals who had experienced severe post-infectious complications such as pulmonary embolism, meningitis, or myocardial infarction necessitating intensive care. One participant had pre-COVID-19 myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The majority was infected between late 2020 and early 2021, prior to widespread vaccine availability, and all but one participant had not received any vaccine dose at the time of initial infection. Participant characteristics are presented in more detail in Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e.\u003c/p\u003e \u003c/div\u003e\n\u003ch3\u003eMain categories\u003c/h3\u003e\n\u003cp\u003eSeven interconnected categories emerged from participants' narratives, with secondary analysis examining gender differences (i) (Fig.\u0026nbsp;\u003cspan refid=\"Fig1\" class=\"InternalRef\"\u003e1\u003c/span\u003e, Table\u0026nbsp;\u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e). Table\u0026nbsp;\u003cspan refid=\"Tab3\" class=\"InternalRef\"\u003e3\u003c/span\u003e presents participants' theories about why gender differences occur in Long COVID (ii); focused codes are detailed in Table \u003cspan refid=\"MOESM1\" class=\"InternalRef\"\u003eS1\u003c/span\u003e and Figure S2.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eParticipant characteristics\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"3\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCharacteristics\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eN\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eOverall\u003csup\u003e1\u003c/sup\u003e\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eAge\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e27\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e56\u0026thinsp;\u0026plusmn;\u0026thinsp;12\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMissing\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e3\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eGender\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e30\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFemale patient\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e9 (30%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMale patient\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e18 (60%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFemale caregiver; female caretaker\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1 (3.3%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFemale caregiver; male caretaker\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e2 (6.7%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eCountry\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e30\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eAustria (P18-30)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e13 (43%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFrance (C1-2, P3-8, C9, P10)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e10 (33%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSweden (P11-17)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e7 (23%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eTime from first infection to interview date (years)\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e20\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e3.42\u0026thinsp;\u0026plusmn;\u0026thinsp;0.58\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMissing\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e10\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eDate of first infection\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e20\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eBefore Dec 2020\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e12 (60%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eDec 2020\u0026ndash;Jun 2021\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e8 (40%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMissing\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e10\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eNumber of vaccine doses received before infection\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e19\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e18 (95%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e3\u0026ndash;4\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1 (5.3%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMissing\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e11\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eNumber of vaccine doses received in total\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e22\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e3 (14%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e1\u0026ndash;2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e6 (27%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e3\u0026ndash;4\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e10 (45%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e5+\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e3 (14%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMissing\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e8\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eSetting\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e30\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eface-to-face\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e6 (20%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003ephone\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e24 (80%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003ctfoot\u003e \u003ctr\u003e\u003ctd colspan=\"3\"\u003e\u003csup\u003e1\u003c/sup\u003eMean\u0026thinsp;\u0026plusmn;\u0026thinsp;SD; n (%); Interview numbers (1\u0026ndash;30) were indicated in parentheses. P: Patient; C: Caregiver\u003c/td\u003e\u003c/tr\u003e \u003c/tfoot\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003e \u003c/p\u003e \u003cp\u003ePanel A: Conceptual diagram illustrating relationships among the seven main analytic categories. Arrows indicate directional relationships between categories, with bidirectional arrows showing reciprocal connections. Panel B: Categories and their corresponding focused codes are displayed by gender salience, which was defined based on analytical relevance rather than frequency of occurrence across the dataset. Women-salient codes are shown in orange, men-salient in blue, and codes salient across genders in grey.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab2\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 2\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eMain categories with supporting quotes\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"3\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCategory\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eShort analytic summary\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eSupporting quotes\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eIllness-Led Disruption and Identity Reconstruction\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eParticipants describe emotional aftereffects and ambiguity related to sudden, involuntary shifts, engaging in existential rumination, and often seeking a label or medical validation amid uncertainty\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;I think I was just unlucky to get infected by my husband who got well quickly. Just a few weeks. And it hit me hard. I think\u0026hellip; I have no underlying diseases, I feel that I was completely healthy, always exercised a lot and was active. But after the COVID-19 infection, you felt like this... your wings were clipped, you kind of can't take much, and very often you don't want anything either, you kind of just want to be left alone.\u0026rdquo;\u003c/em\u003e (P11, 41y, F)\u003c/p\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;Well, it's probably that you have something in your body before and then that you might have been hit by this and then that you might have been hit harder.\u0026ldquo;\u003c/em\u003e (P16, 54y, F)\u003c/p\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;They have taken a lot of tests and blood tests and sent me for X-rays, X-rays of the brain and there were also heart examinations. Nothing has turned up. I suspect it is after COVID-19, or, and this is my own theory, covid vaccination, I am vaccinated 3 times.\u0026ldquo;\u003c/em\u003e (P11, 41y, F)\u003c/p\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;I wasn't surprised. A lot came together at the time I was ill at the end of 2023. A lot of stress, uncertainty, a life crisis. Several stresses came to a head. It was foreseeable that I would fall ill in some way. In retrospect, not extremely surprising, but the question of why Long COVID.\u0026ldquo;\u003c/em\u003e (P25, 27y, M)\u003c/p\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;Sometimes I can spend the whole night searching and reliving the dream when I was in a coma, like I was in another dimension.\u0026ldquo;\u003c/em\u003e (P7, 67y, M)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSocial Presence of Illness and Relational Responses\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eHow do these involuntary shifts manifest within social support systems and broader society? Patients and caregivers describe adaptations in support structures, such as changes in care dynamics, domestic responsibilities, and experiences of social trivialization or stigma\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;She's like an anchor in the surf (patient\u0026rsquo;s wife). She catches me. She's struggling with her own health. We're both a bit worn down. We don't have any options. We don't feel like we belong anywhere. We don't feel understood. We don't get any feedback. They think I'm a crybaby who's always running to the doctor. It's not really uplifting.\u0026rdquo;\u003c/em\u003e (P18, 65y, M)\u003c/p\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;Few people know. Those who do know have shown interest in what's behind it. I'm open with the people who are important to me. If I'm invited out or they suggest something and I'm not feeling well, I can say that I'm not feeling well, and they understand because of my illness. I get understanding, but in a way, you have to work for it. People don't know anything about the disease (ME/CFS).\u0026rdquo;\u003c/em\u003e (P28, 49y, M)\u003c/p\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;Yes, well, I haven't gotten much support. Because it's like that, aa, \"I've also had COVID-19, it's nothing to complain about\", they say if you start talking about it. And then you can stand and talk to someone else a lot, \"yes, I know exactly what it's like\", they can say. But they can't know that when they haven't had it like I\u0026rsquo;ve had it. \"I was in bed for a week\", that's not the same as 8 weeks in the hospital.\u0026rdquo;\u003c/em\u003e (P13, 70y, M)\u003c/p\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;It\u0026rsquo;s complicated to understand what a caregiver really is and what they are really experiencing. It\u0026rsquo;s complicated because people don\u0026rsquo;t understand how hard it is. They can\u0026rsquo;t imagine how difficult it is to take care of a sick person. But all caregivers will tell you that.\u0026rdquo;\u003c/em\u003e (C2, F(M))\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCumulative Functional and Structural Vulnerabilities\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eFunctional decline becomes a structural matter, intensified by existing systemic gaps and contributing to heightened vulnerability and financial concerns\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;I feel like I can start working again. But I'm worried that it will knock me down again next winter... I wonder how that works in terms of work and whether I'll end up on welfare at some point. How can I find a job that matches my level of education and be reliably available for it?...I was on part-time reintegration before rehab and said that it would be possible to return to work if I could take longer breaks or retreat to a room where I could lie down and where it was darker. Or structure my work much better than before. He simply said that I wasn't fit for work. If you need to take breaks, you're not fit for work. I struggle with that a bit.\u0026rdquo;\u003c/em\u003e (P24, 39y, F)\u003c/p\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;I worked remotely\u0026hellip;even though you can manage more or less, there are still times when there are scheduled meetings or things, and they don\u0026rsquo;t always fit well with family life (children). Once a week, I had to go in person and arrange for care. And it was complicated because today I can\u0026rsquo;t, tomorrow I can. Well, you had to plan three weeks in advance to organize a morning, under normal circumstances... it wasn\u0026rsquo;t my wish, but given the complexity of the situation, I stopped (working).\u0026rdquo;\u003c/em\u003e (C2, F(M))\u003c/p\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;There is a social and financial network for people who are ill. But if you don't have an illness, you don't exist. If you want to register as unemployed, which I have never done in my life, you are immediately available for job placement. That's not possible. It would be counterproductive. If I were looking for work, I would find a job tomorrow because I have qualifications that are in demand. On the other hand, I know that if I'm there for two days and collapse in my current condition, the end of my employment is foreseeable.\u0026rdquo;\u003c/em\u003e (P28, 49y, M)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFrom Constructive Coping to Practical Management\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eParticipants adapt emotional coping and disease-management behaviors, with attitudes such as a \u0026ldquo;fighting spirit,\u0026rdquo; reframing the illness, and cultivating gratitude, collectively interpreted as positive mechanisms\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;As soon as I realize that I can't do it anymore. And it helps to stop wanting to. For me, the term \u0026ldquo;meditative walking\u0026rdquo; fits very well. When I was feeling better again, I might have walked 700 m or 1 km at most. But extremely slowly. Like an old person with a rollator, at that pace. I tried to find a way to still get something out of it. It's incredibly boring to walk so slowly. I then listened to a podcast or music and discovered interesting facades in side streets in the area. I managed to adapt well to the slowness, so that I felt good and had the opportunity to enjoy it.\u0026rdquo;\u003c/em\u003e (P24, 39y, F)\u003c/p\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;There are other people too\u0026hellip; in the past it was \u0026lsquo;gasen i botten\u0026rsquo; all the time, but it also left its mark. That\u0026rsquo;s why my heart ended up the way it did. It\u0026rsquo;s hard to say, but it acted like a brake. Now I can value things more and plan better and take it more easily and such, like other people do. \u0026hellip;When others sat and thought about what to do, I was already out working and was almost done (laugh).\u0026rdquo;\u003c/em\u003e (P15, 67y, M)\u003c/p\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;Many friends say that they don't understand how I can be so social and in a relatively good mood even though there's been so much shit. I try to stay above the surface of the water.\u0026rdquo;\u003c/em\u003e (P14, 68y, M)\u003c/p\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;I'm my first therapist already. The doctor isn't in second place. He's there to support me.\u0026rdquo;\u003c/em\u003e (P3, 71y, M)\u003c/p\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;It's nice to find like-minded people. There are Facebook etc. ME/CFS self-help groups. For me personally, this is of little use because the illness is very individual. What is right for me may be wrong for someone else. At the same time, many have a victim role. That is also understandable. But it quickly leads to collective complaining in these forums. That is certainly a catalyst for many. People want to communicate, but for me it's counterproductive because it drags me down. It has no sense of purpose.\u0026rdquo;\u003c/em\u003e (P28, 49y, M)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eInternalized Norms and Self-Imposed Care Barriers\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eTendencies to avoid reflection, downplay or normalize symptoms, not wanting to be a burden stemming from internalized social norms regarding identity, social roles, and responsibilities\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;You know, I feel that they can't help me anyway, so why should I tell them? For them to feel sorry for me? You don't get help anyway, and I don't want pity.\u0026rdquo;\u003c/em\u003e (P11, 41y, F)\u003c/p\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;I refuse to have Long COVID. I've always been very optimistic and forward-looking my whole life. I think it's just that I'm almost 75 years old now. I don't think I'm damaged by Covid. I don't want to believe that.\u0026rdquo;\u003c/em\u003e (P26, 75y, F)\u003c/p\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;Yes, and there are probably several people who are in the same situation as me, who don't want others to know about it. I'm a bit of a sneaky covid patient. Like I said, no one at work, only my family, my husband, not even my children know about it. They just know that mom is tired, I don't want to tell people about it.\u0026rdquo;\u003c/em\u003e (P11, 41y, F)\u003c/p\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;It's more difficult at work because I feel guilty about being absent more often than usual. That's not really like me.\u0026rdquo;\u003c/em\u003e (P21, 42y, F)\u003c/p\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;My husband hesitated for longer (to seek medical care). We have an architecture firm and I was a school principal at the time. There was a lot to do. He left a little later. He couldn't stand it at home anymore either.\u0026rdquo;\u003c/em\u003e (P20, 66y, F)\u003c/p\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;You don't always want to burden others and ask questions. That's why you always make sure that you manage everything yourself.\u0026rdquo;\u003c/em\u003e (P29, 53y, M)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSelf-Advocacy Amid Institutional Neglect and Fragmentation\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003ePerceptions of insufficient, fragmented care, lack of follow-ups and concerns about public health measures forcing self-advocacy\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;..after I got out (of the hospital), we were completely abandoned\u0026hellip;We were left in the lurch and given no information about what to do if we felt bad, where to go. We had to research it all ourselves. By the time we found out, it was already too late to really take advantage of it. It should have been much faster. They should have taken better care of people.\u0026rdquo;\u003c/em\u003e (P27, 51y, M)\u003c/p\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;Now I can't even get an appointment with the doctor, I've been trying to book an appointment since the beginning of February (now it's mid-March), and it says in the medical record that I called. But now it's almost embarrassing to call and nag. I think it's really to just accept the situation. I feel helpless\u0026hellip;I feel like the health center is kicking me around like a football, \"you can sort of fend for yourself, it's nothing dangerous\".\u003c/em\u003e (P11, 41y, F)\u003c/p\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;My family doctor always took me seriously, but other specialists\u0026mdash;the cardiologist didn't attribute it to psychological factors, but I've often experienced that with male doctors. It was particularly extreme in rehab. He had no understanding of Long COVID and told me that perhaps I was exhausted after physical exertion because I was overweight and not used to exercising. I'm a bit heavier, but I also have quite a bit of muscle. That's nonsense. He told me I shouldn't live alone because I need emotional relaxation. He said it would be best for me to live with someone of the opposite sex.\u0026rdquo;\u003c/em\u003e (P24, 39y, F)\u003c/p\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;It's up to each individual to decide whether to get tested. But I think it's irresponsible not to get tested and still participate in social life, i.e., going to a restaurant, a soccer stadium, or a concert, when I know full well that I may be contagious.\u0026rdquo;\u003c/em\u003e (P30, 48y, M)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eDesired System Improvements and Supports Aiding Recovery\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eParticipants commonly call for a healthcare professional to monitor from a \u0026ldquo;bird\u0026rsquo;s-eye\u0026rdquo; perspective and assist in coordinating care. More attentive, up-to-date, tailored care is needed\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;I needed someone to manage things for me, like doctor's appointments and where I could go and what tests I could have done\u0026hellip;Having to do that research alone, in a state of illness where you are exhausted, there is an urgent need for something in the healthcare system that takes that burden off you.\u0026rdquo;\u003c/em\u003e (P24, 39y, F)\u003c/p\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;It should also be made clear that natural medicine and herbal teas are sometimes very good, but you can't beat cancer with them. You have to go to conventional medicine. More and more people don't understand that and then the diseases spread\u0026hellip;. Medicine should, and does, work closely with science and provide much more information. What is happening with the anti-vaccination movement and the horrible nonsense of attacking nurses - the fact that something like this can happen is simply terrible. We need to educate people on a permanent basis.\u0026rdquo;\u003c/em\u003e (P26, 75y, F)\u003c/p\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;I now know people who have COVID-19 but simply don't get tested because it's too expensive. Their primary concern is the cost. Testing has been abolished, and now you have to pay for it yourself. As a result, no one does it anymore.\u0026rdquo;\u003c/em\u003e (P30, 48y, M)\u003c/p\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;When you come out of something like that, you need to be accompanied, to have people to talk to us, to explain things to us. I was searching alone... on the internet to find answers alone. But then you tell me this thing on the internet, is it true? Is it not true? We don't have a professional who can explain it to us.\u0026rdquo;\u003c/em\u003e (P15, 67y, M)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003ctfoot\u003e \u003ctr\u003e\u003ctd colspan=\"3\"\u003eP: Patient; C: Caregiver; F: Female; M: Male; F(M): Female caregiver, Male patient\u003c/td\u003e\u003c/tr\u003e \u003c/tfoot\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab3\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 3\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eParticipant theories on gender differences\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eExplanatory domain\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eHow Participants Explained Gender Differences in Long COVID\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\" morerows=\"1\" rowspan=\"2\"\u003e \u003cp\u003eGender bias in medicine\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;It's difficult to compare men and women medically because drugs have been tested for men and women often get the wrong dose or the wrong medication. It's like comparing apples and oranges.\u0026rdquo;\u003c/em\u003e (P28, 49y, M)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;I believe that in medicine, at least among certain older male doctors, women are more easily dismissed as having psychological issues. I would say that women are less likely to be believed when they say that exhaustion is really the cause of their illness. That with women, people are perhaps more likely to say that it's psychological, perhaps because of the multiple stresses they face. Perhaps this is less the case with men. That's a clich\u0026eacute;.\u0026rdquo;\u003c/em\u003e (P24, 39y, F)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eGendered occupational segregation\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;The type of work you do also makes a difference. I met a primary school teacher. All those who have to be 100% present at work in some way. When I work in an office, I can take a ten-minute break. But a teacher in an elementary school class can't leave the classroom for five minutes and close her eyes. You have to take that into account too. What jobs do women have and what jobs do men have? If you assume that women generally have more social jobs, nursing or something like that. If you take that as a given, and there are studies on this, then I can imagine that women have more problems with things like that, including keeping their jobs.\u0026rdquo;\u003c/em\u003e (P24, 39y, F)\u003c/p\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;But perhaps it also depends on your lifestyle. Smoking. Drinking. If men do heavier work, that has a different effect. A man working in construction has to exert himself more physically.\u0026rdquo;\u003c/em\u003e (P21, 42y, F)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\" morerows=\"4\" rowspan=\"5\"\u003e \u003cp\u003eGendered social norms\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;I can think that women may have more responsibilities when they are part of a family. Or they may take on more responsibility in the social structure. After an acute illness, they may feel more pressure to be physically active sooner.\u0026rdquo;\u003c/em\u003e (P25, 27y, M)\u003c/p\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;Nowadays it's still mainly women who take on the care work and also have to look after children at the same time. If I'm not feeling well, I just can't manage to tidy up for a week or two. Then it only bothers me. But if you have a family and are responsible for them, or feel responsible for them, then it's really very stressful. \u0026lsquo;With a child, you can't just say, I'm sick, I can't do it right now. ..I have met more women with Long COVID than men. All of the women with Long COVID that I have met deal with it in the way that I would stereotypically expect men to. \u0026ldquo;I have to get through this. I have to keep working. I have to get back into shape.\u0026rdquo;\u0026rsquo;\u003c/em\u003e (P24, 39y, F)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;I believe that women, especially when they are part of a family unit, are used to taking care of others. They may see themselves in the role of a nurturing mother and forget about themselves a little in this situation. Perhaps they push the first signs of illness aside because they put their family first. Perhaps they overlook the first signs and are more likely to develop Long COVID. Without resorting to stereotypes, there are plenty of men who have a cold and are deathly ill, while their wives with a fever of 39\u0026deg;C take care of the family. This also has a lot to do with the double burden of family and career that women face. I believe there are many stress factors that go beyond the biological.\u0026rdquo;\u003c/em\u003e (P28, 49y, M)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;Or maybe men don't complain as much. I don't know if really fewer men have Long Covid than women, or they have to work and maintain the family.\u0026rdquo;\u003c/em\u003e (P22, 53y, F)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;I tell myself that we men are much more sensitive to diseases, to symptoms, etc., because we give it our all. They don't take the trouble, for example, to exercise or to have a good diet\u0026rdquo;\u003c/em\u003e (P10, 62y, M)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;Sometimes I joke that men don't love themselves because they treat themselves so badly. Drinking, smoking, and being hysterical. They don't look after themselves because they believe they are godlike and nothing can happen to them.\u0026rdquo;\u003c/em\u003e (P26, 75y, F)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\" morerows=\"1\" rowspan=\"2\"\u003e \u003cp\u003eDiffering social responses and coping mechanisms\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;I believe that women are more likely to seek advice from friends and deal with the issue openly. Men would be more likely to deal with it discreetly and shut themselves away at home. They would isolate themselves and withdraw. That's how I would stereotypically think. But I think women would be more likely to confide in their friends and talk openly about illnesses\u0026rdquo;\u003c/em\u003e (P28, 49y, M)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;My girlfriend and my mother were very understanding. I would expect a man, myself, if a woman in a Long COVID environment didn't really believe her at first and say: \"Go for a walk. You'll be fine.\" That's what I've sometimes heard from men around me. There are definitely differences. I've found that the women around me are much more understanding and the men tend to think it could be something else. That it's psychological, that you're just imagining it, that you just have to be a bit more active.\u0026rdquo;\u003c/em\u003e (P25, 27y, M)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003eP: Patient; F: Female; M: Male.\u003c/p\u003e \u003cdiv id=\"Sec8\" class=\"Section2\"\u003e \u003ch2\u003eIllness-Led Disruption and Identity Reconstruction\u003c/h2\u003e \u003cp\u003eCOVID-19 was experienced as a disruption to patients' life trajectory and sense of self, voiced through metaphors such as \u0026ldquo;having their wings clipped\u0026rdquo;, being \u0026ldquo;back to square one\u0026rdquo; or \u0026ldquo;down at the bottom more than ever before\u0026rdquo;. Sudden physical changes reoriented participants toward survival and constrained their ability to attend to concerns beyond illness; former activities lost meaning as priorities shifted toward self-care or, for some, caring for others:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003e\u0026ldquo;I slowed down considerably. Shopping, cooking, taking care of myself, getting to the pharmacy or arranging for someone else to do it for me - that filled my days. Everyday life consisted of taking care of the most necessary things.\u0026rdquo;\u003c/em\u003e (P24, 39y, F)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eNegative future outlooks articulated as \u0026ldquo;not having a path forward\u0026rdquo; were discussed in relation to fears of non-recovery, death, recurrence of physical limitations, and symptoms resembling post-traumatic stress. Uncertainty arising from limited medical knowledge and clinical validation heightened the need for reassurance and sense-making, taking the form of existential questioning (\u0026ldquo;why me?\u0026rdquo; reflections) and spiritual reframing predominantly among women, while both genders sought external information, weighed competing explanations, and developed personal illness interpretations to cope with causal ambiguity:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003e\u0026ldquo;Psychologically, it's just that you want to do things, but you can't anymore. You try to run at full speed with the handbrake on\u0026rdquo;\u003c/em\u003e (P28, 49y, M)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003c/div\u003e\n\u003ch3\u003eSocial Presence of Illness and Relational Responses\u003c/h3\u003e\n\u003cp\u003eIllness-related disruptions led to adjustments in the distribution of roles and responsibilities: While partners initially compensated for functional limitations through delegation of chores and shared financial burden during periods of work inability, prolonged recovery periods were associated with increased caregiver strain, with one ultimately withdrawing from the workforce to care for her spouse and children. Elderly care was undertaken by female family members; their emotional strain was linked to the rarely appreciated and uncompensated labor. Few participants described \u0026ldquo;having to work\u0026rdquo; for recognition by educating others about the disease and justifying their limitations, as they were often not seen or understood when unable to meet expectations in the absence of visible illness:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003e\u0026ldquo;Contact is quite reduced. But in itself, it's difficult because people don't know what I have. I look healthy, I'm young, and when I'm outside, I don't look like a corpse. So it's difficult when I tell people I can't go there because I'm sick. You can't tell by looking at me.\u0026rdquo;\u003c/em\u003e (P25, 27y, M)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003e While soliciting support by verbalizing vulnerabilities elicited favorable social responses, experiences of trivialization intensified feelings of isolation already present due to restricted social participation. Relational closeness was further strained by fears of reinfection; in contrast, shared illness experiences coincided with increased empathy, a moral commitment to supporting others, and a sense of responsibility to contribute to research, even when recalling certain memories was emotionally difficult.\u003c/p\u003e\n\u003ch3\u003eCumulative Functional and Structural Vulnerabilities\u003c/h3\u003e\n\u003cp\u003eFunctional limitations and reduced participation in social life gave rise to heightened concerns about future financial security and potential dependence on welfare. Work norms requiring stable capacity and limited reintegration policies poorly accommodated recurrent, unpredictable symptoms, resulting in difficulties maintaining pre-COVID-19 professions.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003e\u0026ldquo;The employer put up with it for a long time. There's hardly any employer who would keep you on for three years even though you're on sick leave. It worked out well. But at some point, the question arose as to what we would do if things continued like this. It costs the employer money. So we parted ways by mutual agreement.\u0026rdquo;\u003c/em\u003e (P29, 53y, M)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cdiv id=\"Sec11\" class=\"Section2\"\u003e \u003ch2\u003eFrom Constructive Coping to Practical Management\u003c/h2\u003e \u003cp\u003eComing to terms with impaired functioning was described in relation to cultivating gratitude through comparisons with poorer outcomes, redefined future expectations, discontinuing efforts to \u0026ldquo;push\u0026rdquo; improvement, and recognizing unintended gains:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003e\u0026ldquo;Sometimes I wonder how much of those things I do now, if I hadn't gotten COVID-19, I probably would have exercised just as much, and I wouldn't have had time to do the other things that I do now. We have started a business, I have been working with that, in addition to my regular job, filling my time with such things. If I hadn't gotten ill from COVID-19, I think, for example, that I wouldn't have run a business on the side.\u0026rdquo;\u003c/em\u003e (P12, 55y, M)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eIndividuals expressing what we interpreted as a fighting spirit or an \u0026ldquo;I manage\u0026rdquo; attitude (predominantly men), actively developed strategies to \u0026ldquo;stay above the surface of the water\u0026rdquo;, such as cautious pacing by goal setting, anticipatory avoidance of being alone in vulnerable situations, and deviating from practices that no longer seemed beneficial. One male patient questioned the usefulness of self-help groups given the heterogeneity of illness experiences and the general tendency toward collective complaining.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec12\" class=\"Section2\"\u003e \u003ch2\u003eInternalized Norms and Self-Imposed Care Barriers\u003c/h2\u003e \u003cp\u003eInternalized social pressures were linked to struggles in acknowledging illness, shifting towards detachment and deliberate disengagement from retrospective reflection framed as \u0026ldquo;punitive\u0026rdquo; (greater tendency in men). Desire to appear strong was evident in impression management efforts to avoid pity or unwanted attention, suppression of personal needs, downplaying of symptoms and tendency to attribute limitations to alternative explanations:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003e\u0026ldquo;When people see me on the street, I don't like to be asked about my appearance. That's why I dress nicely in the morning, and when I go out and take a taxi to go shopping, which is already a strain for me, I get ready as quickly as possible. No one would ever guess that I have a problem.\u0026rdquo;\u003c/em\u003e (P28, 49y, M)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec13\" class=\"Section2\"\u003e \u003ch2\u003eSelf-Advocacy Amid Institutional Neglect and Fragmentation\u003c/h2\u003e \u003cp\u003eNavigating fragmented healthcare without clear guidance left participants frustrated and feeling abandoned, describing themselves as \"wandering around\" and \"being kicked around like a football\":\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003e\u0026ldquo;I got so frustrated, being sent around to different clinics, it becomes like a vicious circle, instead of getting help\u0026hellip; It feels a bit like you have to be healthy to be sick, to have the energy to get help when you're sick. One can't manage to call and tell the same thing to different people if you know you won't get help anyway. Then you think, \u0026lsquo;Alright, then I'll have to fend for myself then\u0026rsquo;.\u0026rdquo;\u003c/em\u003e (P11, 41y, F)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eNormalization and dismissal of persistent symptoms in healthcare settings were prominently experienced by women, where clinical assessments emphasized perceived functionality over patients\u0026rsquo; narratives. Repeated medical consultations without definitive results, often entailing out-of-pocket expenses, introduced an additional barrier to care access, including rigid documentation requirements for aid eligibility and physicians not keeping pace with emerging conditions:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003e\u0026ldquo;I get irritated every now and then when I go to the doctors and nobody gets anything done. You have to see where you can get your money from. There's rehab money from the pension insurance. Then you get assessed and have to go to a doctor who is 70 years old and says to your face: \u0026lsquo;I'm already that old. I'm no longer interested in corona. But I have to write a report about it.\u0026rsquo; What are you supposed to do there? The doctor gets paid for the report, even though he's not even competent. During these days and weeks, you get upset, angry and just want to sh*t on it.\u0026rdquo;\u003c/em\u003e (P29, 53y, M)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eThe relaxation of public health measures was interpreted by one participant as a deliberate strategy of allowing widespread infection. Masks were framed by another as \u0026ldquo;dust masks,\u0026rdquo; and one participant argued that the negative effects of pandemic control measures, particularly restrictions affecting children\u0026rsquo;s ability to attend school in person, outweighed the benefits for transmission control. These views were expressed exclusively by men.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec14\" class=\"Section2\"\u003e \u003ch2\u003eDesired System Improvements and Supports Aiding Recovery\u003c/h2\u003e \u003cp\u003eParticipants wished for better physician awareness of post-infectious conditions, with one noting this would have prompted earlier recognition and action, and another describing feeling like \"fighting a losing battle\" with unfamiliar physicians who raised eyebrows at ME/CFS:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u0026ldquo;\u003cem\u003eI would have liked to see a certain level of awareness. If various tests have been carried out and nothing has been found, and the patient says that they have been ill several times recently, it should also be pointed out that there are conditions such as Long COVID or other post-viral conditions, and that they should find out whether the symptoms match these conditions\u003c/em\u003e. \u003cem\u003eIf I had been made aware earlier by a professional that it could be Long COVID, and not just by my family, I might have paid a little more attention and perhaps taken more care of myself earlier.\u0026rdquo;\u003c/em\u003e (P25, 27y, M)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eThey expressed strong needs for multidisciplinary care allowing general practitioner oversight and post-discharge follow-up. Female patients valued attentiveness where they could be \u0026ldquo;read like an open book\u0026rdquo;; a male patient sought better integration of psychological support within medical care; participants overall felt encouraged by advances in research, and desired better structured, more accessible care.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003e\u0026ldquo;You find yourself with a particular practitioner... You talk about a specific pathology, and they handle it, whereas, well, it should be... COVID-19 should be a chain.\u0026rdquo;\u003c/em\u003e (P3, 71y, M)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003c/div\u003e"},{"header":"Discussion","content":"\u003cp\u003eWe studied persistent symptoms following SARS-CoV-2 infection comprising severe post-infectious complications in a multi-national cohort of 27 patients and three caregivers at 3 years of follow-up, with an analytical focus on how gender shapes survivorship, lived experiences and perceptions. Most but not all participants depicted acute COVID-19 and its aftereffects as a turning point in their life courses, accompanied by a rupture of implicit assumptions regarding self-concept, capacity and anticipated future best described by Bury\u0026rsquo;s term (1982) of \u0026ldquo;biographical disruption\u0026rdquo; [\u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e, \u003cspan citationid=\"CR32\" class=\"CitationRef\"\u003e32\u003c/span\u003e]. Perceived disruption of everyday life, together with causal ambiguity surrounding an emerging disease, appeared to elicit both shared and, at times, distinct behavioral patterns across genders. Efforts to construct meaning around experiences and to seek reassurance dominated in women\u0026rsquo;s accounts; men commonly framed questioning the \u0026ldquo;why\u0026rdquo; as unhelpful and, for some, as punitive, the deliberate avoidance of retrospective reflection was interpreted as a self-protective strategy aimed at preserving emotional stability. Changes in social roles and responsibilities involved increased dependence on partners and family members for care, finances, aid- and health-management, being exposed to cumulative structural vulnerabilities as the recovery period extended (e.g., expiration of sick-leave entitlements amplifying financial insecurity, withdrawing from work due to caregiving demands). Challenges arising from navigating fragmented care and emerging physician awareness reinforced self-advocacy, whereby patients closely followed research advancements or participated in research, became more attuned to bodily signals, and proactively engaged in well-being practices. Conversely, social norms created additional barriers to care by delaying disease acknowledgment through symptom downplaying and by reducing recognition and support via concealment in social interactions.\u003c/p\u003e \u003cp\u003eParticipants\u0026rsquo; reflections on gender-related differences in long COVID outcomes point to perceived mechanisms whereby competing caregiving demands, compounded by the dual burden of uncompensated care and employment obligations, may delay recognition of early symptoms and pressure women to resume functioning prematurely. Related barriers to healthcare access were widely observed during the pandemic, particularly in low-income settings and in contexts where caregiving and domestic responsibilities are disproportionately borne by women [\u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e, \u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e]. Long COVID was described as an intervening factor within these roles among individuals with parenting tasks by another study, which, in turn, may lead to disruptions in self-concept and heighten pressures to re-engage with pre-COVID-19 roles [\u003cspan citationid=\"CR35\" class=\"CitationRef\"\u003e35\u003c/span\u003e]. On the other hand, men\u0026rsquo;s poorer outcomes have been associated with later engagement with healthcare, described in relation to prioritization of breadwinner roles, norms of endurance and stoicism, and stereotypical beliefs around male self-neglect. A pandemic-era qualitative study from Brazil examining normative patterns of masculinity described invulnerability beliefs in relation to denial of COVID-19 and resistance to control measures, as well as perceived threats to breadwinner identity [\u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e36\u003c/span\u003e]; the latter resonated with identity-related tensions articulated by participants. Accounts of affective detachment, self-descriptions of being \u0026ldquo;unaffected\u0026rdquo; as a means of preserving dignity, slowing down framed as personal choice rather than necessity, not wanting to look \"powerless\" through complaint, and more critical appraisals of pandemic control measures among men collectively reflect orientations aligned with stoic norms.\u003c/p\u003e \u003cp\u003eHowever, resilient attitudes and adaptive coping behaviors centered on energy management were more salient in men\u0026rsquo;s accounts, often emerging following near-death experiences (NDE) related to severe COVID-19. Emphasis on survival over long-term consequences was described in relation to spiritual coping, feelings of gratitude culminating in optimistic future outlooks. Given the higher acute severity of COVID-19 among men in our cohort, accounts following near-death experiences were read in relation to themes described in NDE research, including \u0026ldquo;higher self-esteem, greater focus on living in the present, and a view of death as a transition rather than absolute annihilation\u0026rdquo; [\u003cspan citationid=\"CR37\" class=\"CitationRef\"\u003e37\u003c/span\u003e]. In contrast, estimates of morbidity burden in Long COVID suggested greater long-term disability and loss of DALYs per infection among females [\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e]. Accordingly, the accumulation of long-term functional impairment with existing or higher exposure to structural vulnerabilities may manifest as pessimistic future orientations and heightened illness-related concerns, constraining their coping capacity and self-management of symptoms.\u003c/p\u003e \u003cp\u003eRecovery was narrated as a relational process shaped through interactions with others. Initial illness episodes elicited empathy and support within social circles; later ones were increasingly normalized or dismissed as infection became widespread. In parallel, anxiety regarding the exacerbation of physical constraints and reinfection continued to limit participation in everyday life. In the workplace, fear of physical collapse translated into increased absences, triggering guilt and shame; repeated breaks for pacing purposes were not tolerated long-term, taking the form of assessments of being \u0026ldquo;unfit for work\u0026rdquo;. The discrepancy between functional capacity and institutional demands was perceived as most limiting in socially intensive occupations requiring sustained activity and cognitive engagement, which were thought to be associated with a greater risk of employment termination. Long COVID risk has been shown to be higher in education, healthcare, and other patient-facing roles, sectors in which women are overrepresented [\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e]. In a recent study from Germany on the healthcare sector and social services, more than three quarters of employees with work-related COVID-19 reported post-COVID, while approximately half experienced diminished work capacity [\u003cspan citationid=\"CR38\" class=\"CitationRef\"\u003e38\u003c/span\u003e].\u003c/p\u003e \u003cp\u003ePredominantly women appeared to encounter dismissal in healthcare settings, with concerns readily framed as psychological or lifestyle-related followed by referrals to psychiatric care, echoing participants\u0026rsquo; own theories on gender-related biases in healthcare and existing literature [\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e, \u003cspan citationid=\"CR39\" class=\"CitationRef\"\u003e39\u003c/span\u003e]. Ortona et al. argued that this pattern may emerge from women\u0026rsquo;s greater awareness of their bodies and earlier symptom reporting, and in some cases finding expression in prevailing gendered normative assumptions [\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e], presented as given by a woman patient in the present study: \u003cem\u003e\u0026ldquo;men tend to complain less\u0026rdquo;, (P22, 53y, F;\u003c/em\u003e Table\u0026nbsp;\u003cspan refid=\"Tab3\" class=\"InternalRef\"\u003e3\u003c/span\u003e\u003cem\u003e)\u003c/em\u003e. The constellation of experiences revealing substantial barriers to access to care, including trivialization of symptoms in both social and healthcare settings, limited or absent financial support, and the need to continuously advocate for care three years after the initial infection, raises concern. Occupational segregation draws attention to the need for work reintegration policies that consider gender, as well as improved access to financial and institutional support including childcare, particularly when return to work is not feasible. Future policies must address these needs by improving public visibility and awareness of post-infectious complications, and through implementation of a structured, longitudinal, multidisciplinary care that also accounts for gender differences and social support pathways.\u003c/p\u003e \u003cdiv id=\"Sec16\" class=\"Section2\"\u003e \u003ch2\u003eLimitations\u003c/h2\u003e \u003cp\u003ePatients who required hospital care due to severe acute infection with SARS-CoV-2 comprised the majority; accordingly, the cohort composition deviated to a certain extent from broader Long COVID populations with milder COVID-19 courses. Another limitation was the unequal gender distribution (a men-to-women ratio of 3:2) and divergence from that reported in epidemiological studies of Long COVID (higher prevalence among women) [\u003cspan additionalcitationids=\"CR5\" citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e], which might have amplified selection bias and limited transferability by potentially overrepresenting men\u0026rsquo;s narratives. Furthermore, experiences beyond binary gender categories were not represented in this study. Enrollment of patients from the outpatient long COVID cardiac care may have introduced additional heterogeneity in data sources (self-reported diagnosis versus clinician-confirmed) and limitations related to missing information; prior hospitalization, vaccination status, and the timing of the initial COVID-19 infection was unavailable for this additional group of patients. No data on racial/ethnic background, religion and socioeconomic status were collected. Lastly, country-specific sub-cohort analyses were not undertaken, limiting the ability to examine potential culture-dependent differences across participating countries.\u003c/p\u003e \u003c/div\u003e"},{"header":"Conclusion","content":"\u003cp\u003eQualitative analysis indicated that recurrent episodes of functional constraints in Long Covid shaped self-concept by enforcing modifications in roles and responsibilities, heightening vulnerability to gaps in structural safety nets and displacing additional strain onto family or partnership relations. In response to an emerging disease lacking a definitive medical label, women participants pursued explanations for their symptoms and illness course; narratives of dignity and emotional stability were linked to resistance to illness identity across genders, and to avoidance of past-oriented reflection among men. Survival-based outlooks and resilience was described in relation to NDE, while perceived neglect from the healthcare system compelled self-advocacy and self-management of disease. Participants\u0026rsquo; hypotheses on gender differences in long COVID outcomes reflected implicit expectations around gender roles and norms shaping responses to illness. Intersecting challenges call for coordinated, holistic care attentive to systemic barriers, social relations, and gendered patterns.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cp\u003eDisability-adjusted life years (DALYs); Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS); Near-death experiences (NDE); Post-acute sequelae of SARS-CoV-2 (PASC);\u003c/p\u003e\n\u003cp\u003eURInary peptidomic patterns of Long COVID syndrome (UriCoV)\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eData Supplement\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eSupplementary material 1. UriCoV Interview Guide; Figure S1. Preliminary themes derived from pilot interviews; Figure S2. Prominence of focused codes by gender; Table S1. Focused codes and exemplary conceptual processes\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eEthics approval and consent to participate:\u003c/strong\u003e Ethical approval was provided the Medical University of Vienna (ethics vote number: 2442/2020) and the institutional review boards of the participating sites (Sweden: Dnr 2023-02474-02 and France: 2023-A01974-41).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent for publication:\u0026nbsp;\u003c/strong\u003eNot applicable.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAvailability of data and materials:\u0026nbsp;\u003c/strong\u003eBecause the study is based on qualitative interviews that may contain information enabling participant identification, the datasets generated and analyzed during this study are not publicly accessible. Additional data may be obtained from the corresponding author upon reasonable request and subject to appropriate ethical considerations.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompeting interests:\u003c/strong\u003e All authors declare that they have no competing interests.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding\u003c/strong\u003e: This work was supported by the FWF [grant number I 6464]; by the Sweden\u0026rsquo;s innovation agency (VINNOVA) [grant number 2022-00542]; and the French National Research Agency [Agence Nationale de la Recherche (ANR)] under the grant ANR-22-PERM-0014.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthors\u0026apos; contributions:\u0026nbsp;\u003c/strong\u003eDG: Conceptualization, formal analysis, investigation, project administration, visualization, writing \u0026ndash; original draft, ES: Investigation, writing \u0026ndash; review and editing, EN: Investigation, ED: Project administration, resources, MM: Project administration, resources, writing \u0026ndash; review and editing, BP: Project administration, resources, writing \u0026ndash; review and editing, LV: Investigation, AK: Investigation, JS: Project administration, resources, AE: Supervision, writing \u0026ndash; review and editing, MG: Resources; UK: Supervision, writing \u0026ndash; review and editing, MH: Supervision, conceptualization, investigation, project administration, funding acquisition.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAcknowledgements:\u0026nbsp;\u003c/strong\u003eWe thank all interview participants for generously sharing their time and experiences. We further acknowledge the collaboration with the outpatient long COVID cardiac care at the Medical University of Vienna.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n\u003cli\u003eChen C, Haupert SR, Zimmermann L, Shi X, Fritsche LG, Mukherjee B. Global Prevalence of Post-Coronavirus Disease 2019 (COVID-19) Condition or Long COVID: A Meta-Analysis and Systematic Review. J Infect Dis. 2022;226:1593\u0026ndash;607. https://doi.org/10.1093/infdis/jiac136.\u003c/li\u003e\n\u003cli\u003eHou Y, Gu T, Ni Z, Shi X, Ranney ML, Mukherjee B. Global Prevalence of Long COVID, Its Subtypes, and Risk Factors: An Updated Systematic Review and Meta-analysis. Open Forum Infect Dis. 2025;12:ofaf533. https://doi.org/10.1093/ofid/ofaf533.\u003c/li\u003e\n\u003cli\u003eGreenhalgh T, Sivan M, Perlowski A, Nikolich JŽ. Long COVID: a clinical update. 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Health Equity. 2024;8:32\u0026ndash;8. https://doi.org/10.1089/heq.2023.0068.\u003c/li\u003e\n\u003cli\u003eMcArthur M, Tian P, Kho KA, Bhavan KP, Balasubramanian BA, Ganguly AP. Childcare as a social determinant of access to healthcare: a scoping review. Front Public Health. 2024;12:1443992. https://doi.org/10.3389/fpubh.2024.1443992.\u003c/li\u003e\n\u003cli\u003eSchr\u0026ouml;der D, Schmachtenberg T, Heinemann S, M\u0026uuml;llenmeister C, Roder S, El-Sayed I, et al. Parenting and Gender as Impact Factors for Social Participation, Quality of Life, and Mental Health in Long COVID. J Prim Care Community Health. 2024;15:21501319241255592. https://doi.org/10.1177/21501319241255592.\u003c/li\u003e\n\u003cli\u003ede Sousa AR, Moreira WC, da Silva Santana T, Ara\u0026uacute;jo IFM, Borges CCL, Almeida \u0026Eacute;S, et al. Sociohistorical Analysis of Normative Standards of Masculinity in the Pandemic of COVID-19: Impacts on Men\u0026rsquo;s Health/Mental Health. Front Psychol. 2022;13.\u003c/li\u003e\n\u003cli\u003eBianco S, Testoni I, Palmieri A, Solomon S, Hart J. The Psychological Correlates of Decreased Death Anxiety After a Near-Death Experience: The Role of Self-Esteem, Mindfulness, and Death Representations. J Humanist Psychol. 2024;64:343\u0026ndash;66. https://doi.org/10.1177/0022167819892107.\u003c/li\u003e\n\u003cli\u003eHassanin R, Peters C, Nienhaus A, Koch P. Determinants of work ability among health and social services workers with work-related COVID-19 infection in Germany. BMC Health Serv Res. 2025;25:789. https://doi.org/10.1186/s12913-025-12938-9.\u003c/li\u003e\n\u003cli\u003eElderkin‐Thompson V, Waitzkin H. Differences in clinical communication by gender. J Gen Intern Med. 1999;14:112\u0026ndash;21. https://doi.org/10.1046/j.1525-1497.1999.00296.x.\u003c/li\u003e\n\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"bmc-public-health","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"pubh","sideBox":"Learn more about [BMC Public Health](http://bmcpublichealth.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/pubh/default.aspx","title":"BMC Public Health","twitterHandle":"@BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"Long COVID, post-viral syndrome, qualitative interview study, gender-related differences, grounded theory, survivorship concept","lastPublishedDoi":"10.21203/rs.3.rs-9103579/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-9103579/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cstrong\u003eBackground:\u003c/strong\u003e Despite individuals experiencing a gradual reduction in persistent symptoms following SARS-CoV-2 infection, a subset remains at increased risk of death and health loss up to three years post-infection. Given prior evidence of gender-related disparities in acute COVID-19 outcomes and informed by survivorship concept, we examined psychosocial aspects of Long COVID by considering gender-related differences in participants’ narratives.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eMethods: \u003c/strong\u003eIn this multi-center qualitative study, 27 patients with persistent symptoms following acute COVID-19 and three primary caregivers were interviewed using a semi-structured interview guide across centers in Austria, France and Sweden. Qualitative analysis was informed by Charmaz’s constructivist grounded theory and stratified by self-reported gender.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eResults:\u003c/strong\u003e The study cohort consisted predominantly of individuals previously hospitalized for acute COVID-19 assessed at a mean follow-up of 3.4 ± 0.6 years post-infection. Functional constraints coincided with shifts in self-concept prompting retrospective reflection and a search for reassurance predominantly among women; altered roles and responsibilities increased caregiver strain and heightened structural vulnerability in the context of prolonged recovery. Perceived neglect in healthcare prompted both women and men to engage in self-advocacy in aid- and health-management. Survival-oriented positive future outlooks and resilience following near-death-experiences were salient among men. Neglect of health needs was associated with a premature pressure to perform due to caregiving demands among women, and with prioritization of the breadwinner role and masculinity-linked stoic ideals of invulnerability among men.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConclusion: \u003c/strong\u003eBoth patient and caregiver narratives revealed intersecting challenges warranting holistic, coordinated care attentive to systemic barriers, social relations, and gender-related patterns.\u003c/p\u003e","manuscriptTitle":"“Trying to go at full speed with the handbrake on”: Living with persistent symptoms after COVID-19, a qualitative interview study","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2026-04-23 09:27:18","doi":"10.21203/rs.3.rs-9103579/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"editorInvitedReview","content":"","date":"2026-04-27T19:50:21+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"232871585252139426851887234346185409840","date":"2026-04-22T15:08:11+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"103560746779049581490596083745756648398","date":"2026-04-20T17:10:08+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"91135761573944330734469393561072030742","date":"2026-04-17T14:51:14+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2026-04-15T11:09:04+00:00","index":"","fulltext":""},{"type":"editorInvited","content":"","date":"2026-03-17T09:10:47+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2026-03-16T11:30:16+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2026-03-16T11:29:59+00:00","index":"","fulltext":""},{"type":"submitted","content":"BMC Public Health","date":"2026-03-12T10:08:04+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"bmc-public-health","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"pubh","sideBox":"Learn more about [BMC Public Health](http://bmcpublichealth.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/pubh/default.aspx","title":"BMC Public Health","twitterHandle":"@BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"f77e0985-5adf-4957-a847-be09eebb3481","owner":[],"postedDate":"April 23rd, 2026","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"under-review","subjectAreas":[],"tags":[],"updatedAt":"2026-04-23T09:27:24+00:00","versionOfRecord":[],"versionCreatedAt":"2026-04-23 09:27:18","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-9103579","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-9103579","identity":"rs-9103579","version":["v1"]},"buildId":"XKTyCvWXoU3ODBz1xrDgd","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}