"Why me?": Qualitative research on why patients ask, what they mean, how they answer and what factors and processes are involved.

This article draws on several qualitative research studies ( Klitzman, 1997 , 2008 ; 2012 , 2019 ; Klitzman et al., 2023 ) of how patients, including physicians when they develop serious disease, cope with various conditions, including HIV, diagnoses associated with genetic testing (e.g., breast cancer and Huntington’s disease [HD]) and infertility/in vitro fertilization (IVF), and hospital chaplains, supplemented by additional conversations with patients and providers. Methodological and other data from these studies have been reported elsewhere ( Klitzman, 1997 , 2008 ; 2012 , 2019 ; Klitzman et al., 2023 ). In brief, these studies explored participants’ views, experiences, challenges and decisions concerning the medical issues confronted, including ways of coping, to obtain “thick descriptions” ( Geertz, 1973 ). Participants were recruited largely through flyers, websites, Listservs, e-mail, and word of mouth. All participants volunteered to be part of the study and provided informed consent. In each study, the Principal Investigator (PI) conducted confidential in-depth semi-structured interviews with each participant concerning experiences of having, or being at risk for, disease. Interviews were conducted in the PI’s office or on the phone, and took approximately 1–2 h, and were conducted in each study until saturation was reached for major and minor themes. Interviews were all audiotaped, transcribed, and content-analyzed, informed by grounded theory ( Corbin and Strauss, 2008 ), and “code saturation” ( Hennink et al., 2017 ; Saunders et al., 2018 ). Similar questions were used in all of these studies and included, for instance: When did you first find out about your current diagnosis or condition and what was your reaction to it at the time? Have your thoughts and feelings about it changed over time, and if so, how? What issues concerning your diagnosis or condition have been the most challenging? How did you address these? What has been most helpful? Do you have any thoughts about these issues? For each study, once the full set of interviews was completed, subsequent analyses were conducted in two phases, primarily by the PI together with research assistants (RAs) who had social science training. In phase I of the subsequent coding, the PI and RAs independently examined a subset of interviews to assess factors that shaped participants’ experiences, identifying categories of recurrent themes and issues that were subsequently given codes. The coders systematically coded blocks of test to assign “core” codes or categories (e.g., instances of interviewees asking, “why me?” and discussions of causes of an illness). The coders then worked together to reconcile their independently developed coding schemes into a single scheme, developing a coding manual and examining areas of disagreement until reaching consensus between them. New themes that did not fit into the original coding framework were discussed, and modifications were made in the manual when deemed appropriate. In the next phase of the analyses, these thematic categories were subdivided into secondary or subcodes, and were then refined and merged, when suggested by associations or overlap in the data. Subcodes (or subthemes) were conceptual and thematic subdivisions of these larger categories (e.g., specific causes such as God, other larger cosmic forces, self or unknown factors). Codes and subcodes were then used in analysis of all of the interviews. To ensure reliability, two coders analyzed all interviews. To enhance trustworthiness, we triangulated the data with existing literature. To enhance reflexivity, the PI kept and analyzed field notes, including reactions and potential effects on the interviews. The PI and RAs also kept recorded notes and examined these during the process of data analysis. Many respondents raised questions about “why me?” in response to broader questions posed in the interviews about coping with a medical condition more generally. These comments form the majority of comments reported here. Interviewees were also then asked about whether they had wondered “why me?” While some participants who pondered this question concluded that they did not in fact deserve it, others still wrestled with the question, and had not yet fully, emotionally, accepted a single answer. Many participants who asked this question were not simply indicating that they didn’t deserve their disease, but rather were in fact generally asking a genuine question, and struggling to determine an answer. Participants’ struggles with questions about “why me?” were not simply drawn from external cultural sources, as might be suggested by the “culture as toolkit” model ( Swidler, 1986 ), but reflected deep internal, emotional states, conflicted feelings and doubts. The current paper presents the themes that emerge concerning “why me?” and includes representative quotes from the interviews, to also allow readers to judge these data for themselves. These data also have a certain face validity that, arguably, further substantiates their trustworthiness. These issues concerning “why me?” are brought together here for the first time and highlighted since they may contribute to, and inform future healthcare practice, research and education.

Characteristics of the participants in each of these separate studies are summarized on Table 1 . In brief, a total of 224 participants were interviewed, including 119 men and 105 women; of whom 75% were white, 16.5% African American, 5.8% Latino and 2.7% other. As summarized in Fig. 1 , many patients ask, “why me?” at some point in their illness, but these statements often in fact have different emphases and meanings, and entail complex processes over time. Many patients focus on one of a range of possible causes (i.e., focusing on why me? – whether God or some larger kind of order, rather than mere randomness is involved) and/or on whether they are somehow being singled out and/or punished (i.e., why me vs. someone else?). Patients often undergo a dynamic process , confronting this question at various points, arriving at different answers. They commonly recognize that this question lacks a clear answer, and that asking it is irrational but, given unknowns and the lack of definitive answers, they find that they ask it nonetheless. These processes can be affected by social contexts, and reflect anger, depression, despair and/or resistance to notions that randomness or chaos may play roles. In asking “why me?” many patients are primarily pondering possible causes – whether human behavior, God or chance or themselves. Some patients say they do not ask “why me?” because they fully accept the ostensible medical causes of the medical condition and/or do not view it as serious or stressful. As a physician with breast cancer said, I don’t believe in God, or that I’m being punished or tried for a higher purpose. I’m a scientist. When bad things happen to good people, it’s simply bad luck or genetics. [MD/Patient #11] Other patients may not ask “why me?” because they know that they engaged in certain behaviors that contributed to their disease. A woman with HIV said, “I don’t ask ‘why me?’ because I know why. I ingested drugs.” [HIV #8] Instead, she blames herself and wrestles with guilt and regret. Yet countless other patients and families wonder at various points whether a larger cosmological or metaphysical cause may somehow be involved. Many feel that their disease may result from a combination of both physical and larger cosmic causes. One man at risk of HD, a severe neurological disease caused by an autosomal dominant gene with 100% penetrance, described how a woman in her HD support group said, “I know I have the disease because I have the gene, but why did God give me the gene, and not give it to my sister ?” [HD #11] Though the presence of the mutation offers an ostensible factual explanation, many patients find that it is hard to integrate into their ongoing narrative about themselves the notion that sheer random chance may account for a devastating diagnosis. Such a notion fails to feel emotionally satisfying or salient. Patients may therefore focus on broader, more emotionally-resonant notions of a larger cosmic order, wondering if a cosmological or metaphysical force – which is not necessarily God per se , but rather “ karma ” or some kind of larger underlying order in the cosmos – is involved in the medical events and stresses. As one man with HIV said about a girlfriend, who infected him with the virus and then died of the disease, “what goes around comes around” [HIV #5], suggesting a sense of cosmic justice that may not be explicitly connected to God or religion per se . Patients differ in whether they see such an order as caused by, or connected to, God per se , or to a vaguer, less defined or articulated sense of karma or cosmic justice that lacks a specific source or structure. Such a larger order can provide an important sense of solace and meaning. As a patient with breast cancer said, I’ve had sort of bizarre kinds of ‘why me?’ thoughts. I’m single and have a little nest egg, but my family is not in a good financial position. Sometimes I wonder if maybe, because by my dying, there’ll be a significant amount of money, and everybody will be taken care of. I also sort of believe in people’s whole lives: I don’t think you just die. Maybe I’ve learned all I’m supposed to learn in this lifetime. Maybe when you get to the point of enlightenment for the life you’re in, you die. I don’t know. I don’t think, ‘Did I cause it?’ or ‘ Why me , as opposed to someone else?’ but more: ‘Why me? – there must be a bigger picture – that somehow my having it will help.’ I work with all the directors at a large firm. Maybe my contribution to the world will be doing significant fundraising. So, I think ‘why me?’ in the sense of, ‘this must be part of something bigger.’ [BRCA #16] As she suggests, she recognizes that these thoughts are “bizarre” and not wholly logical, but she thinks them anyway. Many patients ask, “why me?” largely because they feel they are being somehow singled out. One woman, for instance, said about her eight years of unsuccessful infertility treatment, I don’t believe that God wanted this. There is no reason for it. It’s definitely unfair and stinks. Why does it happen to certain people? I don’t know. I don’t think anyone does. [Nonetheless], I went through all of those emotions. When I look online or go to the doctor and see all those other women there, I know I’m not the only one going through this. But I felt, ‘Why is this happening to me ? Why am I going through this? No one else I know is going through exactly the same thing.’ [IVF Patient #9] She recognizes the inherent unknowns here, but nevertheless still finds herself pondering these quandaries. As she suggests, in asking “why me?” patients may feel that they are somehow being singled out, and compare themselves to their peers either pre- or post-illness. When I queried her, “When you asked, ‘why me?’ what did you tell yourself?” she replied, “I don’t know. I didn’t really have an answer. That’s what was so frustrating … I’m a good person. I haven’t really done anything terribly wrong.” [IVF Patient #9] She thus considered and then ruled out the possibility that she was being punished. Patients often struggle with these questions in ways that constitute a process over time. As one woman with infertility, who couldn’t get pregnant despite multiple in vitro fertilization (IVF) cycles and other interventions, said, Emotionally, there’s a whole process … I wanted something, someone, some reason to blame . What brought this upon me?...What did I do to deserve this? I don’t have a relationship with my mother, so I wondered if karma came back to bite me. My husband has had a lot of health problems, so I thought, maybe that was the reason. [IVF Patient #5] She had endometriosis and wondered if that was a contributing factor. “Logically,” she knew that these other reasons were not the main ones. Nonetheless, she found herself wondering if God did not want her to have a child! I was definitely ticked off at God and thought: ‘Just let it happen, it would be easier on both of us’ … Mostly I kept it all in perspective: maybe my body was just not able to. But I started thinking: ‘Maybe it wasn’t meant to happen. Maybe my body isn’t meant to have a child.’ [IVF Patient #5] She and others highlight several key issues, searching their own lives for more than simply physical, biochemical processes as causes of bad events. They look for explanations that have narrative coherence for them, making sense to them emotionally and fitting within their story of their lives. At times, she believed that a metaphysical reason must somehow exist, even if she cannot fully fathom it, wondering if she is being punished (“What did I do to deserve this?“). She and others frequently undergo complex processes, recognizing the unanswerability and/or irrationality of these larger cosmological questions, but contemplating them nonetheless, suggesting how patients can separate “logical” assessments from these complex emotional processes. Many patients wonder if they somehow deserve bad outcomes, and at times feel that they do, related to guilt, anger, fear, anxiety, desires to avoid blame, or other psychological factors, even if recognizing intellectually that such feelings are unhelpful. Conversely when disease occurs, friends or family may say that the patient, “must have done something to deserve this,” while the patient staunchly disagrees. As one mother was told by her sister, after the mother’s child was manifesting developmental delays, “You must have done something really bad if God could have done this to your child.” Individuals also ask, “why me?” when a bad event befalls not themselves, but a close family member or friend, suggesting Survivor guilt ( Hutson et al., 2015 ; Murray et al., 2021 ). A patient at risk of HD, for instance, who learned that he lacked the mutation, though his sister possessed it, asked, “why did God give the mutation to my sister, but not to me?” Similarly, for instance, a chaplain at a VA hospital reported that Vietnam veterans with whom he has worked have asked him, “why did my buddy get blown up, while I did not?” [Chaplain #10] Patients may hence ask this question when receiving bad news about not only themselves, but about someone to whom they are close, even if they simultaneously received good news about themselves. Other people may support or oppose a patient’s questions or answers regarding “why me,” agreeing or disagreeing whether the patient’s own actions or God’s will was or was not involved in causing a disease. A patient may feel that he or she did nothing wrong, or feel of guilty about past behaviors that may have played a role in the disease. Friends or families may reject such beliefs and/or notions that a disease represents punishment or not. Patients may clash with friends and families over whether these thoughts are helpful, given that physiological causes are ostensibly involved, or whether a patient’s searches for larger cosmological meaning represents refusal to take responsibility for the patient’s own actions. For instance, a 25-year-old man at risk for HD, when growing up, was regularly beaten by his father, who also had the disease, which can cause behavioral problems and violence. This son now grapples with how much to blame this abuse on his father’s mutation, and wants to fault his father, but struggles with these tensions. Ultimately, this interviewee sees his father and other patients as still responsible for their behavior. Everybody has the ‘why me’s?’ But the world is just the way it is … I don’t have a sense that there’s predestination. Some people are born left-handed. There are biological reasons for it, but to try to figure out the cosmic roll of the dice, and why you ended up with one set of situations, and somebody else another, is not worth it. People don’t want to take responsibility for their own behavior: ‘We’re not responsible for the failure. That was just bad luck.’ Or, ‘We’re not responsible for your success; that was just good luck.’ The cosmic has reached in. [HD #13] But, he disagrees with individuals who blame undesirable outcomes on bad luck, rather than assuming responsibility for their own decisions and actions that may have been involved, People make their own luck: It’s how you take advantage of situations. You can take advantage of all opportunities that come along, and later on weed them out. You go through a learning period, when you make some stupid mistakes: ‘maybe I shouldn’t do that next time.’ People who refuse to learn or don’t take advantage of opportunities have lousy luck. People who learn from their mistakes, and accept new situations tend to have good luck. A friend thinks he has terrible luck – permanently stuck … But, he’s not a guy with bad luck: he’s a shlemiel who doesn’t make very good choices for himself. [HD #13] While many patients have mutations that are treatable and affected, too, by environmental factors such as diet and exercise, which individuals may influence, HD mutations are uniformly fatal and lack treatment. This interviewee thus accepts certain constraints that result from the “roll of the dice.” Randomness – as reflected in the fact that he got the HD mutation – has profoundly affected his life. He wants an ultimate explanation, but senses that it is elusive, and thus not worth pursuing or stewing about further. Nonetheless, he resists wholly genetic or other deterministic explanations, because of the frightening implications – helplessness before onslaught of the disease. He prefers to believe that individuals can shape their predicaments. As he suggests, patients may thus also face disagreements about these questions from friends or family members. As these interviewees suggest, a range of emotional factors can play key roles here, including disappointment, anger, despair, depression or guilt. These feelings can affect whether, and how often and strongly patients ask, “why me?” and how they answer. Psychotherapeutic perspectives can help, but these questions can nonetheless linger.The woman above with infertility, who felt singled out, reported that eventually, a psychotherapist assisted her in reframing these issues. A counselor put those feelings in perspective for me: They’re normal, but not helpful. It’s better to think, ‘What am I going to do?’ Have a game plan, think positively. If you want to have a child, one way or another you will. Don’t think, ‘It’s not going to work,’ but ‘I’m doing this because I believe it’s going to work.’ [IVF Patient #9] She highlighted how existential and spiritual unease can fuel desires for “positive” reframing and thinking, and how psychotherapy can hence potentially help. But unfortunately, not everyone who could benefit from psychotherapy obtains it. Many cannot afford it. Moreover, despite this therapist’s practical-outcome approach, questions of “why me?” continue at times to bother this patient. She still experiences feelings of being uniquely affected, even though she realizes that these perceptions are factually inaccurate.

These data suggest how patients and their loved ones vary considerably in how, and with what frequency and meanings they ask “why me?” While prior studies have each tended to conceptualize this phrase in a relatively unitary fashion, often suggesting that it is fixed for an individual, the present data highlight how patients can vary and shift their views over time, undergoing a process. The phrase “why me?” is, after all, a question, not an answer , and often signifies the beginning, not the end of a journey. Earlier research has often, however, been quantitative and cross-sectional, and seen patients as either finding an answer or not ( Puchalski, 2006 ), and the answer as being single ( Hutson et al., 2015 ), yet dynamic processes may be involved in which individuals may shuttle back and forth due to evolving medical events and stresses that occur. The present data elucidate how questions of “why me?” do not always produce dichotomous, binary results of patients having either made sense of a traumatic event or not. Rather, individuals may ponder and/or accept multiple meanings and answers to this question to varying degrees and shift among these over the course of a disease, continuing to wonder or have doubts, and revealing how patients differ in the extents to which they have in fact found an answer and how satisfying and long-lasting it is. Though the question of “why me?” may, for some patients, represent God’s anger, others contemplate or wrestle with, but ultimately reject this conclusion. Patients can also vary in seeing “why me?” as referring to proximal vs. more distal causes of disease, and may fluctuate in choosing to focus emotionally on one explanation or the other. The data presented here also reveal how social contexts can shape these questions and responses, which prior studies have not probed. These data underscore, too, how many patients, in assessing their condition, find it hard to accept pure randomness, and resist chance alone as a key factor, preferring to blame themselves, rather than feel helpless before chaos, without control. Psychotherapy can help, but mental health treatment is often not available, covered by insurance, or used by all patients. These findings suggest, too, how patients’ views and comments concerning disease can vary widely in ways that mental health and medical providers and others may not always sense, grasp or appreciate. Prior research has not, for example, examined how asking “why me?” can entail a complex process, in which patients may repeatedly ask, even though they recognize that the responses may be elusive, irrational and/or unproductive. Previous research has also not explored how social contexts may affect these questions and processes, with family, friends, providers, chaplains or clergy, and others expressing opinions about whether or not the patient and/or God are or are not involved. While prior articles mentioned the phrase, “why me?” and done so very broadly, without defining it, to refer to any etiological theories about disease, whether medical, environmental or religious ( Arnold et al., 2018 ; DuCette and Keane, 1984 ), the present data suggest that patients tend to see the term as referring to larger metaphysical, rather than medical etiologies. While another group of prior studies have used the term to refer to any notion of individual or other responsibilities for a disease ( Lavand’homme, 2017 ), the current data highlight how patients instead often employ the term to indicate being singled out and punished. Though several prior articles see the term as concerning only negative attributions about illness ( Schiaffino and Revenson, 1995 ), the present data suggest that the term could be more emotionally-neutral (e. g., referring more generally to unknown cosmic forces). Patients who wrestle with questions concerning “why me?” face a variety of types of conditions, including diseases that are serious and potentially life-threatening (e.g., cancer and HIV), and/or involve genetics and thus perceived elements of chance (i.e., whether one receives or not a particular genetic variant associated with HD or breast cancer), and/or affect the perceived natural course or progress of life (having a child vs. infertility). Thus, questions of “why me?” appear to be associated not necessarily with whether the patients had engaged in certain behaviors that may have contributed to their disease, but rather with the severity and sense of life expectations and destiny involved. Patients who may have engaged in certain behaviors that may have contributed to their disease may in fact be less likely to ask, “why me?” because the answer may more clearly be their own behavior. These data reveal how questions of “why me?” can reflect several different phenomena, related to various theoretical and conceptual frameworks. The “why me?” question can be associated with the other narratives that people use to explain their illnesses. Specifically, certain other patients more fully invoke “luck” to explain their disease, but tend to see potential causality in binary ways (i.e., that they were lucky or not) ( Stoutenburg, 2015 ). Certain philosophers have argued that being “unlucky” means you are not morally responsible for the event in question ( Nagel, 1979 ; Pritchard and Smith, 2004 ). If an event happens due to luck, the individual is perceived, too, as having been unable to control it ( Turri et al., 2015 ). Luck focuses as well on perceptions of probability: “Lucky events are … determined by chance” Darke and Freedman, 1997 ). Events are seen as “lucky” if they are improbable ( Stoutenburg, 2015 ). Hence, perceptions of whether luck is involved or not, and if so, whether an individual is lucky or unlucky reflect views of whether forces beyond one’s control are involved or not. Yet while luck therefore tends to be perceived in these dichotomous ways (e.g., “lucky” or “unlucky”), questions of “why me?” tend to have wider varieties of possible answers. Asking “why me?” inherently involves posing a question, and individuals asking it may wrestle with multiple , not just two, possible answers. While some patients may ask “why me?” and conclude that the explanation is “luck,” many others continue to grapple with this question and feel unsure about a single response, considering, for instance, whether they may have in part contributed. Luck can thus be related, but also differ from “why me” questions, partly in being relatively more narrowly focused. Patients who ask, “why me?” are not necessarily implying that good health comes from good behavior, and that bad health comes from bad behavior. Rather, patients may go through processes of grappling with these queries and remain uncertain. In and of itself, “why me?” suggests, but does not necessarily constitute, biographical disruption ( Bury, 1982 ). Patients seek to integrate their illness into their ongoing life narratives, but face questions that may represent gaps or lacuna in these unfolding stories, even if not utterly disrupting these narratives. In transitioning to a state of illness, patients may ask many questions, of which “why me?” is only one (though it can be an important one), but patients may be able to manage to integrate the illness into other aspects of their lives relatively well. These data suggest, too, elements of a transactional model of stress and coping and the Common-Sense Model of Self-Regulation ( Folkman et al., 1986 ; Gooding et al., 2006 ; Hale et al., 2007 ). Patients wondering about what caused a disease can engage in a form of appraisal, which is a component of these two models. As with the Common-Sense Model, the present data suggest potential conflicts between the emotional and the cognitive – with patients knowing intellectually that they are not in fact being singled out, but nonetheless still wondering, due to emotional reasons: frustration, worry and despair. As in the stress and coping model, patients wrestling with questions of “why me?” suggest needs to make meaning of the experience and control their emotional responses. Yet while the stress and coping model suggests possible resolution to these conflicts, the present data suggest a process of patients wondering and considering possible answers, even if they know that these don’t make sense. Several prior articles on stress and coping argue that individuals all possess a sense of “global meaning” that provides a cognitive framework to interpret stressful experiences, and that people appraise stressful situations and assign to these stresses meaning that may be discrepant with this global meaning ( Kørup et al., 2019 ). Such discrepancy is theorized to then produce distress that in turn precipitates searches for meaning that can hopefully lead to better adjustment. But the present data highlight how such global meaning does not always constitute a single, fixed or wholly unified category, and can instead consist of complex varying elements that shift over time, as part of dynamic processes within complex societal contexts. Distress can result not just from a discrepancy between global meaning and current trauma, but from underlying questions about self-blame, guilt or punishment. In addition, while some prior articles on stress and coping have seen responses to stresses as automatic and intrusive, rather than deliberative ( Roberts et al., 2006 ; Zakowski, 2001 ), the present data suggest that responses can be both. Studies that have considered automatic processes in patients’ efforts at finding meaning have operationalized these processes as wholly intrusive thoughts ( Zakowski, 2001 ). Yet patients can also find themselves wondering “why me?” and not necessarily experience these thoughts as intrusive per se , but rather as flowing from, and related to, searches for meaning. These data thus underscore how disparate elements can comprise “global meaning” and need to be further examined and unpacked, and how social contexts can be involved. Questions of “why me?” may reflect, too, cognitive dissonance ( Harmon-Jones and Mills, 2019 , revised 2008). Many patients find it hard to accept the idea that randomness and chaos prevail. Even Einstein (1926) said, “God does not roll the dice.” Patients, too, seek narrative coherence, and can therefore face conflicts between threats of disease and desires for a stable, ordered, fair and balanced cosmos and desires to survive. Patients may thus wrestle with how to resolve these tensions, and ask “why me?” They may then blame themselves, feeling that the cosmos is fair and ordered, but that they did something wrong, or that they are innocent and are being unfairly singled out (i.e., that the world is unfair and unjust). These data have several important implications for future practice, research and education. Physicians, nurses, chaplains, psychotherapists, psychiatrists and other providers can potentially aid patients in grappling with these issues, and should be as aware as possible of, and sensitive to, these varied meanings and complexities involved, the fact that patients may use the phrase “why me?” in very shifting and differing ways, the roles of social contexts in affecting responses, and the ways that dynamic processes and other factors can be involved. Patients’ views concerning “why me?” can also potentially affect their medical decisions – whether and to what degree they seek, start, or adhere to treatments. Psychotherapists and other healthcare providers can potentially aid patients grappling with these quandaries in particular ways, but should be careful not to assume that they know what each patient means by this phrase. Instead providers should ask the individual and be aware of the potential variations suggested here. Professional education is needed to train providers regarding these complexities and nuances. Patients may benefit from support in addressing these issues, especially if patients struggle with this question to relatively high degrees (e.g., with associated ongoing frustration or despair), additional support might be needed. Several therapeutic approaches can potentially aid patients struggling with “why me?” questions. Reality testing ( Kantrowitz et al., 1987 ), and cognitive reframing ( Robson and Troutman-Jordan, 2014 ), for instance, can encourage patients to see that they do not have reasons to blame themselves for their illness, and can instead focus on best to cope now with the stresses they have to face. Patient education can also help patients and their families in addressing the challenges involved with this question. These data also suggest future research agendas. Not all patients ask, “why me?” raising questions for future research studies, among larger samples, concerning why certain patients do so, what they mean, how they answer it, what makes the question difficult, and what factors may be involved (e.g., type of disease, social contexts, religiosity and degrees to which patients may have contributed to their disease in some way or feel guilty about past behaviors). These data have several potential limitations. They were collected as part of different studies, yet similar themes emerged, as indicated here, shedding light on the varied complexities and nuances of the term “why me?” in ways that contribute to future explorations of the topic. In reflecting initial forays on key aspects of these themes, these data are thus nonetheless critical in raising several significant issues. These participants were also mostly, though not entirely, white. In addition, each respondent was also interviewed within only one period of time, rather than longitudinally. Future research should examine these issues in more depth among larger and more widely diverse samples of patients at multiple points over time (e.g., 6 months or a year apart). While prior studies have interpreted the phrase, “why me?” in varying ways, each tending to focus on only certain aspects of it, the current data suggest that this question is neither static nor simply binary, but instead highly multidimensional and can be fluid, involving complex processes. Enhanced understanding of these issues can aid future practice, research and education.

Patients and their families facing serious disease or other traumatic situations commonly ask themselves, healthcare providers and others questions regarding “why me?” but many questions remain about what this phrase may mean, when and why patients and families ask, and how they and their healthcare providers and others respond. Patients and families appear to often ponder and ask, “why me?” but the phrase has received scant systematic attention. Research has shown, for instance, that among parents who lost a child in a motor vehicle accident, 91% asked this question and 59% said they were unable to answer it ( Lehman et al., 1987 ), but how they viewed and experienced this question and their difficulties answering it remain unclear. Patients and families confronting serious conditions commonly seek to make sense of their experience, yet a major review of the literature on patients making and meaning, Park (2010) concluded that issues regarding meaning of illness often remain ill-defined, and that empirical research has not kept up with theoretical work, and still needs to be done. Though widely asked by patients and their families, the central question of “why me?” has received little in-depth focus or systematic attention and various researchers have mentioned and/or used the term in widely differing ways. Searching the phrase “why me?” on Google Scholar, for instance, produces over 37,000 hits. In the first 120, this phrase appears in the title of 68 publications, of which over half concern illness. Yet most of these articles merely mention the term metaphorically in the title and/or elsewhere and do not define, focus on, or investigate the concept per se . For instance, an article entitled, “‘Why me?’ Understanding the HCV Care Continuum among people with serious mental illness” investigates barriers to hepatitis C treatment among patients with serious mental illness ( Arnold et al., 2018 ), and examines physical and logistical barriers to treatment, but not questions of meaning per se . Several articles on patients coping with illness have mentioned aspects of the phrase, and of issues regarding “why me?” but differ widely in how they do so – as referring to any or all notions of disease etiology, any questions of responsibility for a disease, or only to negative perceptions related to God’s potential involvement with diseases. Articles may, for instance, use the term to refer to any etiological theories about the disease. For example, one article, “‘Why Me?’ An attributional analysis of a major illness,” examined why thoracic surgery patients thought they had the illness and were recovering well or not well ( DuCette and Keane, 1984 ), and focuses on how casual attributions such as bad habits (e.g., smoking), heredity, past medical history, personality, outside influences, environmental stresses and fate were associated with good or poor recovery ( Arnold et al., 2018 ). Other studies use the phrase to refer to how patients assign any type of responsibility for their illness. A study of parents who had miscarriages, for instance, operationalized searches for meaning essentially as attributing responsibility to oneself, one’s behavior, others, God or chance ( Lavand’homme, 2017 ). Eighty-four percent asked, “why me?” at some point, and 92% said they had not come up with an answer. Still, other researchers use “why me?” to refer essentially to only negative attributions of God’s will and anger. An article entitled, “‘Why Me?’ The persistence of negative appraisals over the course of illness,” operationalized questions of “why me?” as basically indicating depression and rumination ( Schiaffino and Revenson, 1995 ). Yet the fact that the term has such breadth and range of meanings, along with critical other aspects of it have not been examined. Rather, each individual study has tended to conceptualize the term as a relatively single concept or phenomenon. Several quantitative studies have operationalized meaning-making itself as equivalent to the question “why me?” and done so in binary ways, categorizing patients as either asking this question or not, as either arriving at an answer or not ( Cadge et al., 2008 ), and as finding a single answer ( Affleck et al., 1985 ). Critical questions therefore emerge regarding how to make sense of such varying interpretations of the term, how patients themselves may view and use it and why, and what factors may be involved. This topic is important since patients and their families may ask “why me?” not only of themselves and each other, but also of their mental health and medical providers, either directly or indirectly, as reflected in patients’ or families’ views, attitudes, or decisions concerning disease and treatment. Many patients also wish to talk about religious and spiritual concerns in general with their providers, but usually do not do so ( Kørup et al., 2019 ). In one study of in-patients, 41% wished to discuss spiritual or religious issues with someone while hospitalized, but just half of them did so ( Williams et al., 2011 ). Physicians rarely talk about these topics ( Best et al., 2015 ). Though 79% of ICU attendings felt their responsibility included addressing patients’ religious/spiritual needs, only 14% and 7% frequently asked patients and families, respectively, about these areas ( Cozier et al., 2018 ). Even if patients ask at the end of life, 18% of physicians never talk about these concerns ( Arnold et al., 2018 ). Generally, patients initiate these discussions ( Huguelet et al., 2011 ), and doctors sometimes try to change the topic ( Arnold et al., 2018 ). Existential spiritual and religious issues can, however, influence patients’ understandings and decisions regarding disease and treatment ( Choi et al., 2019 ), and hospitalized patients who talked about religion or spirituality, whether they had at first desired to or not, are more satisfied with their care (p < .05) ( Williams et al., 2011 ). Among doctors, 62% think their training on spiritual and religious topics was insufficient, with around half feeling awkward talking about these areas with patients who have perspectives and views other than their own, and 44% fearing that patients will not feel comfortable ( Balboni et al., 2014 ). Physicians state that lack of time and private office space most impede conversations about these issues, but research shows that low amounts of time they devote to these topics is associated instead with their personal discomfort (p < .001), feelings that patients do not wish these discussions (p < .002), fear that patients will not feel comfortable (p < .003), lack of training (p < .04), and discomfort with these topics with patients whose beliefs differ from theirs (p < .05) ( Puchalski, 2006 ). Though hospital chaplains can also discuss these topics, they are frequently under-staffed and cannot see all patients who may benefit from such discussions. Only around 60% of hospitals employ chaplains, and this percentage remained unaltered in recent years ( Cadge et al., 2008 ). Chaplains have seen only 6% of ICU patients ( Choi et al., 2015 ). In several in-depth qualitative research interview studies the author has conducted over several years on a variety of disorders, questions of “why me?” have often arisen. Other issues that emerged in these interviews have been reported elsewhere ( Klitzman, 1997 , 2008 ; 2012 , 2019 ; Klitzman et al., 2023 ). However, in these interviews, issues regarding “why me?” also frequently arose spontaneously, and data from these studies are thus brought together here for the first time to analyze in systematic ways how patients’ use the phrase “why me?“, what meanings it may have and what phenomena may be involved.