(Dis)respect and shame in the context of ‘medically unexplained’ illness

Abstract A significant proportion of somatic symptoms remain, at present, medically unexplained. These symptoms are common, can affect any part of the body, and can result in a wide range of outcomes—from a minor, transient inconvenience to severe, chronic disability—but medical testing reveals no observable pathology. This paper explores two first‐person accounts of so‐called ‘medically unexplained’ illness: one that is published in a memoir, and the other produced during a semi‐structured interview. Both texts are revelatory for their expression of shame in the context of encountering disrespect from healthcare professionals. The first section of my paper, clinical encounters, explores disrespect which, I argue, takes three interconnecting forms in these texts: disrespect for pain when it is seen as ‘medically unexplained’, disrespect for the patient's account of her own pain, and disrespect for the patient herself. The second section elucidates the shame that occurs as an affective and embodied consequence of encountering such disrespect. I claim that patients living with so‐called ‘medically unexplained’ illnesses suffer a double burden. They endure both somatic and social suffering—not only their symptoms, but also disrespectful, traumatic and shame‐inducing experiences of healthcare systems. I conclude with a reflection on the urgent need for changes in clinical training that could improve the quality of life for these patients, even in the absence of an explanation, treatment or cure for their symptoms.

'Complex Physical Symptoms', 'functional symptoms', 'illness without disease' and 'symptoms that cannot be classified'. [14][15][16][17][18] Such variety is indicative of the disagreement that plagues this field. For example, many patients with 'medically unexplained' illnesses strongly believe that an organic cause for their symptoms will eventually be discovered, given time and research funds. [19][20][21] However, this is at odds with many clinicians-such as neurologist Suzanne O'Sullivanwho believe equally strongly that, in the majority of these cases, 'no disease is found because there is no disease to find'; if symptoms cannot be medically explained, then the cause is most likely to be psychological or behavioural. 22 Whilst this debate rages on, there has been a recent boom in publications of memoirs providing first-person accounts of so-called 'medically unexplained' illnesses. 23 One such example is Sarah Ramey's The Lady's Handbook for Her Mysterious Illness: A Memoir. 24 Ramey lives with debilitating physical symptoms, including excruciating pain and severe gastrointestinal issues, but-for many years, and for most of her memoir-her illness remains, as she terms it, 'mysterious'. As a result, she encounters stigmatization and a lack of support; her memoir, like so many others written about these 'mysterious' conditions, details not only somatic but social suffering.
Towards the end of her memoir, Ramey speaks directly to her reader, posing an important question: I just wanted people around me to treat me the way they would treat any other sick person they knewwith dignity, and care, and respect.
Why was that too much to ask? 24 Here, Ramey appears to set up a distinction between 'other sick [people]', who are treated 'with dignity, and care and respect'-and those living with 'mysterious' or 'medically unexplained' conditions who, by implication, are treated with neither dignity, nor care nor respect. This paper will analyse two contrasting accounts of 'medically unexplained' illnesses to interrogate Ramey's question: why is respectful treatment 'too much to ask' for these patients? This analysis will also explore the affective consequences of encountering disrespect in clinical encounters, with a particular focus on shame. Finally, it will consider the implications this may have for clinical practice.

| METHODS
The first of these accounts is Ramey's aforementioned memoir, which tells-over 400 pages of finely considered prose-an emotive account of her experiences of seeking healthcare, in the United States, for a constellation of 'mysterious' symptoms. 24 The second account is told by a woman who we will call Arya. Arya is a British Asian Indian woman, in her 30s, living in the United Kingdom. Like Ramey, Arya lives with gynaecological and gastro intestinal symptoms for which healthcare professionals cannot find a structural cause. I interviewed Arya in the summer of 2021: this was a semistructured interview, lasting 1.5 h, which was conducted using videoconferencing software. My analysis of Arya's account draws from a transcript produced verbatim from an audio recording of our interview, as well as from my field notes completed at the time of the interview.
These two accounts are drawn from a larger project, which analyses 10 memoirs alongside 10 interview transcripts and aims to understand, theorize and, ultimately, propose means of alleviating the shame experienced by women whose symptoms are seen to be 'medically unexplained'. Ramey's memoir and Arya's spoken testimony are particularly revelatory for their expression of shame in the context of disrespect. This paper offers a focused analysis of these two very different first-person accounts so as to probe the connections between these two affective, embodied experiences.
The choice to bring literary text(s) and interview transcript(s) into dialogue was made so as to draw attention to the expression of experiences which can be hard to talk or write about. Through an innovative blend of thematic and literary analysis that attends to the language, imagery, themes, form and structure of these very different first-person accounts, I aim to reveal aspects of these hidden experiences that might otherwise remain unseen or unnoticed.
Respect and shame both have long critical histories, and vibrant inter-and multidisciplinary communities continue to discuss and conceptualize their importance in relation to healthcare. [25][26][27][28][29][30][31][32][33][34][35] In this paper, I build from recent work in bioethics that advocates for the relevance of the concept of 'respect for persons' to experiences of healthcare, and I adopt the definition of respect developed by Beach et al.: 'respect as recognition of the unconditional value of patients as persons […] irrespective of a patient's personal characteristics'. [25][26][27][36][37][38] However, my primary focus in this paper is experiential, not theoretical. I aim to explore respect, in Subramani and Biller-Andorno's words, 'as an embodied concept': respect as it is experienced (in its presence or absence) and expressed in two first-person accounts. 25 I am especially interested in the potential links between (dis) respect and shame in these 'medically unexplained' contexts. I take shame to be a negative self-conscious emotion that results from feeling seen (whether the other is actually present or merely imagined) to be faulty, inadequate or worthless. My understanding of shame is informed by recent work on the phenomenology of shame in medicine, which has revealed shame to be a potent, pervasive force in clinical encounters. [33][34][35] Taking the two aforementioned texts as case studies, this paper explores how shame can be an embodied consequence of encountering disrespect in healthcare settings. Moreover, it elucidates the unique affective and embodied features of this sense of shame that those with 'medically unexplained' illness may be especially vulnerable to experience.
My analysis of these texts will be divided into two sections. The first section, clinical encounters, elucidates the disrespect Arya and In contacting her GP, Arya did what she might reasonably have been expected to do when experiencing distressing and confusing symptoms; she did, as she stresses, 'all the right things'. Arya's GP (and later, GPs), by implication, didn't do all the right things as she was, in her own words, 'completely fobbed off'. Over the course of at least five GP appointments, Arya seems to have felt distinctly and repeatedly dismissed: 'they were all like it's nothing, like just ignore it, like it's nothing kind of thing'. In desperation, Arya pays a significant amount of money for a private consultation with a gynaecologist-but, she says, 'again, they were like oh it's nothing'.
Arya does not go into much detail as to the impact of these appointments, but her gestures and tone of voice are revelatory: she imitates her doctors speaking to her as if brushing her complaints away and-my field notes record-her hand gestures enact this brushing movement. It's apparent she considered this treatment to be dismissive, belittling: she is fobbed off, brushed away and her pain is reduced, as she says, to 'nothing'.
Arya's experiences of secondary care are no more positive: 'the first gynaecologist appointment I had', she told me, 'the woman was like there's nothing wrong with you, are you sure you're not allergic to cheese or chocolate'. This particular appointment seems a memorable one for Arya, who returned later in the interview to expand upon her previous comments: the gynae that I told you about who said oh it might be cheese or chocolate that you're allergic to, […] she was like there's nothing wrong with you, just go home, use more lube during sex basically. And I was like, I'm not having fucking sex, like I wouldn't be using … she was like, oh use more lube you'll be fine kind of thing.
In each of the two times that Arya discusses this particular appointment, she attributes the same phrase to this gynaecologist: 'there's nothing wrong with you'. This phrase has echoes of her GPs' and private consultant's comments-oh it's nothing-but appears all the more distressing: it seems like a more explicit rejection of her pain and its impact. In response to her gynaecologist's advice to 'just go home, use more lube during sex', Arya appears to try to express the limitations her pain imposes on her, saying, 'And I was like, I'm not having fucking sex, like I wouldn't be using …' The impact of her pain on her relationship with her partner was, perhaps, too painful or too personal to discuss in detail during the interview, as it disappears into the pause marked by the ellipses. However, Arya's expletive shines some light on the frustration she felt in this appointment, while the return of the dismissive phrasing attributed to the gynaecologist ('oh use more lube') suggests that she was made to feel not only as if her pain didn't matter, but also as if her suffering as a result of this pain didn't matter either. implies that she may have felt belittled, or even ridiculed. It is not only her pain that is trivialized; she felt personally invalidated by these experiences. This appears to be a deeply distressing experience for Arya, who took care to correct this misreading of her personality in the interview. The implication seems to be that, in the absence of an objective explanation for her symptoms, it is Arya herself who is at fault; if there was nothing wrong with her, from a biomedical perspective, it must be Arya herself-her personality and behaviour -that is wrong.
The disrespect that Arya and Ramey encounter in clinical encounters is multifaceted; it creates distinct layers of distress.
Firstly, their pain itself is dismissed when it is not confirmed by objective evidence; secondly, their accounts of their experiences are minimized, or even rejected; and, thirdly, they are met with disrespect for themselves as people. This is most apparent in Ramey's extended discussion of her encounter with a 'renowned urologic surgeon', which brings Arya's description of the diagnostic process as 'traumatising' into a new light. 24 Ramey travels cross-country to attend an appointment with this surgeon-only to find that, 'like everyone else, he had not known what to make of my case and had referred me down the line'. 24 A few days after her initial appointment, however, Ramey contacts his office to discuss her 'extremely swollen, bright red left labia'. 24 She speaks to a junior on-call physician, who agrees that the next step should be to conduct a labial biopsy under general anaesthesia.  24 Looking up at the 'large, ticking clock on the wall', Hyde tells Ramey that he doesn't have time to take her to the operating room 'for something so trivial'. 24 Ramey is given two choices: either 'toughen up and have the biopsy done right there with a local anaesthetic' or leave. 24 Ramey's severe pain is trivialised but, feeling vulnerable-she's partially clothed, her feet in stirrups-she decides she 'needed to toughen up' and agrees to the procedure. 24 What follows makes for difficult reading. Hyde prepares a 'long needle filled with lidocaine' and inserts it into Ramey's 'bright red, swollen left labia minora'. 24 Ramey screams 'so loud, the nurse had to hold [her] shoulders down'. 24 Ramey waits for 10 min, as instructed, for the lidocaine to take effect. After the allotted time has passed, the area is still not numb-much to the surgeon's displeasure: Sighing, he inserted the long needle into my bright red, swollen left labia minora again, and injected the lidocaine again.
I was screaming as if my own child were being murdered.
[…] He poked it again, and I could still very much feel the touch and the pain […] but he declared that just wasn't possible, that there was no way I could feel anything anymore, told me to be quiet, and proceeded to start cutting into my labia.

I have never cried so hard in my life.
And throughout the procedure, Mr. Hyde would not look me in the eye.
He scooped three oozing red samples onto three glass plates for the laboratory.
Then without saying a word, he cauterised the wound.
And when he was finally done, he simply walked out of the room. 24 Ramey's screams are met with exasperated, disinterested silence; the surgeon denies her pain outright, declaring that it 'just wasn't possible'. We might imagine that it would be difficult to find a more flagrant example of the disrespect that patients with 'medically unexplained' health conditions encounter from healthcare professionals. Ramey's account of her own pain, even when expressed in such a visceral, primal form, is completely dismissed by this surgeonwho doesn't even offer her the simple courtesy of looking her in the eye.
All the more distressing, however, are the more subtle forms of disrespect that Ramey encounters in this appointment. After the biopsy, the nurse asks Ramey which pain medication she would prefer. Ramey declines-she doesn't, she explains, tolerate pain medication well. The nurse is insistent, and eventually, Ramey agrees to take a single dose of Percocet (an opioid medication, containing oxycodone and paracetamol). However, the nurse returns with an ice pack, but no medication. She reports, Ramey writes, 'eyes fixed firmly on her shoes, that the surgeon had refused to prescribe pain medication for me. […] Eyes on shoes, she said that this particular surgeon didn't like to give pain medication to "patients like you"'. 24 When Ramey asks as to the reasons for this refusal, the nurse explains that 'patients with chronic pain can often go to… great lengths to obtain opioids'. 24 The impact of these comments appears, if possible, even more agonizing for Ramey than her surgeon's scalpel:  24 Ramey's screams are replaced by quiet tears; she is reduced, finally, to silence. As she turns her face away, Ramey appears to admit defeat, overwhelmed by her doctor's misjudgement of her and her motivations. The tears falling down her face are not the result of the physical pain of the botched biopsy, but the emotional distress upon encountering such profound and painful disrespect-for her experience, for her pain and for herself.

| CONSEQUENCES
Confronted with the limits of his own knowledge-embodied by Ramey and her inexplicably 'bright red, swollen left labia minora'-Ramey's surgeon responds irrationally and illogically. His palpable rage appears driven by shame, and indeed he fulfils each of Lazare's clues indicating a shame response in the physician: anger at the patient, inadvertent humiliation of the patient, and the wish not to see the patient again. 32 Further evidence is the surgeon's avoidant behaviour, as he evades eye contact and escapes from the situation: not only does he leave the room immediately after the procedure, but he actually leaves the building entirely, requesting no further contact related to Ramey's case. 24 The nurse, too, exhibits a shame response, speaking with 'eyes fixed firmly on her shoes'. 24 However, while shame pervades this encounter, it is Ramey who bears its full impact. Lazare argues that '[a]ngry responses' to shame include displacing shame 'onto someone lower in the pecking order', so it is no surprise that Ramey-the most vulnerable, and least powerful, individual in this encounter-is, ultimately, left sinking into a wheelchair, turning her face away. 32 While this episode is undoubtedly an extreme example, it speaks of a widespread issue encountered by those with 'medically unexplained' illnesses. Lazare writes of 'physicians who are particularly shame-prone over their need to see themselves as perfect and in complete control in their practice of medicine'. 32 By their very definition, 'medically unexplained' illnesses challenge this sense of perfection, control and certainty, which might render physicians-as well as patients-particularly prone to experience shame in consultations regarding these symptoms. Ramey's and Arya's accounts reveal that, instead of acknowledging this shame-and accepting that medical knowledge is, and may always be, incomplete-physicians can discharge their shame onto the patient, who is made to feel that she, and not the limits of medicine, is the problem.  The problem was me. 24 Here, the crated rhetoric of the literary text, with its repeated clauses, allows the pain of this self-blame to ring out-'every single time'. As they continue to be treated in ways that are 'hurtful and demeaning', both Arya and Ramey are forced to come to the same conclusion: the blame is theirs alone. Ramey's experiences of shame appear to echo Arya's. She writes frankly about shame, making clear that 'shame is a big issue' for women with 'mysterious' illnesses-who are, by her own definition, 'addled, embarrassed, ashamed, and inflamed'. 24 Ramey's memoir suggests, in a way remarkably similar to Arya's interview testimony, that the particular nature of the shame that women with 'mysterious' illnesses experience is chronic, characterized by self-blame and selfdoubt. This is made most evident in the following episode, which occurs after Ramey acknowledges that she is 'out of options' for solving her 'mysterious' illness: I am a monster, I thought. 24 Ramey is left, just like Arya, with nothing but herself and, in her anguish and despair, comes to a tragic conclusion. The extreme nature of her self-blaming and self-shaming-expressed in italics, which mimic her inner voice-is shocking, and indeed distressing.
Ramey is sunken in shame: sobbing, curled up in the foetal position, her mind racing 'between which wrong food I had eaten, which wrong emotion I was feeling […]-and on and on and on'. 24 This has a corrosive, destructive impact on her self-esteem and self-worth, evident as she declares to her readers: 'I was a failure', 'I was disintegrating', 'I was destroyed'. 24 Written from within what Ramey terms her 'isolation shame-ber', her unflinching prose permits her readers to witness her chronic, corrosive shame, tinged as it is with expressions of self-blame and self-doubt-laying bare on the page all that she might find too painful to reveal in conversation. 24

| CONCLUSIONS
Patients with so-called 'medically unexplained' illnesses suffer a double burden; they endure both physical suffering and traumatic experiences in healthcare systems. As I have explored, the disrespect that Ramey, Arya and others encounter from healthcare professionals takes three interconnecting forms: disrespect for pain when it is seen as 'medically unexplained', disrespect for the patient's account of her own pain, and disrespect for the patient herself. In some instances, such as Ramey's encounter with the urologic surgeon, this disrespect might betray a shameful response in the physician. 32 Indeed, 'medically unexplained' illness, which highlights the limits of medical knowledge and power, might be a particularly shame-inducing experience for both patient and physician. Arya's and Ramey's accounts reveal that shame can be displaced onto the patient, who is made to feel that her illness is her own fault. This results in a profound and distressing sense of shame, which is chronic, provokes intense feelings of self-blame and is seen to be uniquely corrosive to self-worth.
This has significant implications for clinical practice. While flagrant disrespect-such as that which Ramey experienced at the hands of her urologic surgeon-is obviously an example of poor practice, these textual case studies have illustrated that, for those with 'medically unexplained' illness, disrespect pervades clinical encounters in subtle yet shame-inducing ways, many of which clinicians may be utterly unaware. This highlights the desperate need to reconsider clinical training related to 'medically unexplained' conditions. To take UK medical education as an example, 'medically unexplained' illnesses are said to receive little attention during undergraduate medical training and, indeed, they are often entirely absent from curricula. [39][40][41][42] Considering how common 'medically unexplained' conditions are-and that they may pose a unique affective challenge to clinicians-to exclude them from medical curricula surely benefits neither clinicians nor their patients.
More training is urgently needed in this area, from the earliest days of undergraduate education, through to qualification and beyond. Crucially, this training must focus on patients' lived experiences, as well as on empowering physicians. Firstly, as the literature shows that any training that undergraduate medics do receive on 'medically unexplained' illnesses can be influenced by their tutors' negative perceptions of these conditions, it is imperative that this training is co-developed and co-delivered together with those with lived experience. 39 Sharing first-person accounts can be a powerful tool in medical education-as, I believe, Ramey's and Arya's accounts illustrate. [43][44][45][46] Secondly, this training needs to empower clinicians and enable them to approach these 'medically unexplained' encounters with confidence, with the aim of shielding them from the shame that may be the natural consequence of encountering the limits of medical knowledge. I hope that this paper and these case studies have shown that physicians still possess immense power to improve their patients' quality of life-through respectful, patientcentred, shame-sensitive treatment. Prof. Peter Schaber and Dr. Supriya Subramani also provided detailed feedback on the paper, for which I am very grateful. I would also like to thank the two anonymous reviewers whose thoughtful comments greatly improved this work. Finally, I would like to acknowledge the support of Wellcome, who funded the research that led to this paper, through a Doctoral Scholarship in the Medical Humanities.