Katharine Cheston discusses the isolation, disbelief and stigma experienced by people with poorly understood medical conditions
Autobiographical accounts of illness tend to follow a similar script. Typically, they open with an interruption: new symptoms render the normal abnormal, precluding what had previously been taken for granted. These symptoms are recounted to a healthcare professional: tests are ordered, examinations requested, referrals made – each producing pieces of a diagnostic puzzle to be slotted together by specialists. Eventually, a diagnosis materialises, functioning both as the key that unlocks a treatment plan, as well as the lens through which the ill person – and, in turn, readers of their illness tale – makes sense of what is to come.
But what if this diagnostic puzzle is not solved? What happens when symptoms persist unabated – fevers continue to flare, pain still shoots and stabs – but tests repeatedly return normal results; when the body remains an opaque mystery, its disease and dysfunction invisible to presently-available medical science? What is it like to experience severe symptoms for which a distinct diagnostic biomarker cannot yet be found?
This situation is more common than one might expect – or, indeed, hope. It is thought that between 25-50% of all GP consultations ‘concern symptoms that are not medically explained’ (Verhaak 2006), while ‘a third of new referrals to specialist medical clinics’ will not result in the definitive diagnosis that patients and professionals alike so desire (Burton 2010). Although most of these symptoms are transient, ‘approximately 2% of adults experience persistent or recurrent symptoms which are associated with increased primary care consulting and referral to secondary care’ (Morton 2017). Diagnostic labels such as Medically Unexplained (Physical) Symptoms (MUS/MUPS) or Persistent Physical Symptoms (PPS) are often employed in these circumstances. Alongside symptom-based categories, such as chronic back pain, these labels also encompass – controversially – symptom ‘clusters’ that include poorly-understood conditions such as irritable bowel syndrome and chronic fatigue syndrome, for which there are growing bodies of biomedical evidence (Saito 2011, Padhy 2015; Saha 2019, Mueller 2020, Sweetman 2019). Debates continue regarding the usefulness and appropriateness of these terms, but it is certainly clear that diagnostic labels such as MUS reveal nothing of the immense physical suffering that many with these diagnoses endure. For example, it might be surprising for many to learn that successive studies have shown that, on average, patients with chronic fatigue syndrome experience a significantly lower quality of life and are more functionally impaired than patients with diseases such as cancer, heart disease, and multiple sclerosis (Hvidberg 2015, Nacul 2011, Komaroff 1996).
Somatic and social suffering
In grouping together disparate experiences – from chest pain to seizures to fatigue – not by their similarity but rather by their collective (current) lack of identifiable aetiology, diagnostic labels such as MUS offer neither the closure nor the support that a diagnosis of a recognised organic disease might provide. The consequences of this are not only physical: those with poorly understood conditions experience social, as well as somatic, suffering. Firstly, with no recourse to an accepted biomedical narrative, these patient groups struggle to verbalise their experiences. Paula Kamen, living with chronic headache, writes that she ‘lacked proper medical terminology to classify [her pain], and this affected both [her] treatment and [her] ability to convey the experience to others.’ (2005: 14). This silence, writes Dorothy Wall in her account of chronic fatigue syndrome, is ‘lethal’: ‘When language is inadequate or unavailable, experience disappears, becomes unseen and unacknowledged.’ (2005: 37). The experience is one of isolation and exclusion: Anna Lyndsey likens her life with a rare and unexplained light sensitivity condition to living in ‘the wild healthcare borderland’ (2015: 203) – a landscape evidently contoured by loneliness. It could be said that those with unexplained or contested conditions live somewhere in between what Susan Sontag so famously described as ‘the kingdom of the well’ and ‘the kingdom of the sick’ (1991: 3): shut out from the former but lacking the necessary documentation for full citizenship in the latter.
Compounding this loneliness and isolation is the disbelief and denial that many endure. In her memoir The Lady’s Handbook for her Mysterious Illness, Sarah Ramey describes having been ‘stung too many times by the barbs of disbelief’ (2020: 79), while Kamen eloquently summarises: ‘In our society, a pain is not considered real until doctors say it is; the word of the patient is immaterial.’ (2005: 110). ‘Without some medically accepted, visible pathology, we remain in that grey area of medical doubt and suspicion’ writes Wall (2005: 18). Scientific medicine privileges the visual, and if an illness remains invisible on presently available tests and scans, the person suffering from it can feel both unseen and unheard. For Wall, medical technologies ‘create a hierarchy of patients, with those at the top, who can brandish clear evidence of disease, graced by medical acceptance, and those at the bottom who can’t, tainted by medical distrust.’ (2005: 20). Julie Rehmeyer, who lives with the same condition as Wall, appears to share these sentiments, writing that the ‘only thing calling my illness “chronic fatigue syndrome” seemed to add was a stain of stigma, as if the name provided a window into my soul and displayed some moral failing within me’ (2017: 35-36). Clearly, those with so-called “unexplained” symptoms endure not only the misfortune of falling ill, but also the pain of being tainted and stained by stigma – of living not only with a malfunctioning body but also with a ‘spoiled identity’, as Erving Goffman so influentially put it (1990).
Isolated, disbelieved, and stigmatised, people with poorly understood conditions are particularly vulnerable to experience shame – which is, as Phil Hutchinson and Rageshri Dhairyawan tell us, ‘the emotional response to stigma’ (2017: 225). Indeed, Rehmeyer describes chronic fatigue syndrome as ‘a mark of shame’ (2017: 96), while Ramey writes that women with what she terms ‘mysterious illnesses’ reside within an ‘isolation shame-ber’ (2020: 79). The experiences of shame described by Wall, Rehmeyer, Ramey, Kamen and others are not simply those acute instances of blushing mortification that we can all recognise: that sudden feeling of exposure and the desperate desire to hide. Instead, their shame is typically chronic, characterised by persistent feelings of inferiority, exclusion, unworthiness, rejection, and inadequacy. Shame seeps out of these autobiographical accounts of contested and unexplained illness, evident not only in explicit confessions but also, for example, in feelings of failure, of being at fault. Michael Lewis argues that the ‘idea of responsibility and perceived responsibility is central to stigma and shame’ (1998: 127), and this is echoed by Kamen, who reflects upon our society’s belief in a doctor’s omniscience: ‘if they can’t cure you, the problem must be yours.’ (2005: xiv). Self-doubt, self-blame and self-contempt are enduring bedfellows of the inexplicably unwell – and it appears that experiences of chronic shame and stigmatisation provoke suffering so intense, so severe, that they could even be perceived as worse than the symptoms themselves. Wall is not alone in her belief that it is not her physical symptoms that are ‘the greatest burden and source of grief. It is the reaction of others that is most devastating, the barriers erected through stigma, misunderstanding, rejection.’ (2005: 142).
‘“I don’t know” is where discovery starts’
It is this excruciating entanglement of so-called ‘unexplained’ illness, shame, and stigmatisation that my doctoral research seeks to address, analyse and (hopefully) alleviate. My research embraces the rich interdisciplinarity of the medical humanities, combining literary and qualitative methods: my primary resources include contemporary life writing alongside testimony that will be gathered through interviews conducted with those with lived experience. Although present circumstances have stalled my progress in this area, I want to collaborate closely with patient groups so that my thesis reflects a coproduction of knowledge. This should, I believe, be a central concern of all academic research – but it is especially important in this field, where so many have felt shut out of discussions about their own suffering.
I am aware that such methodologically innovative research inevitably involves a certain complexity, and I am still exploring potential ways of bringing these two strands of my research together. Veronica Heney eloquently expressed my current concerns in her piece for the Polyphony last year (2019), where she wrote that ‘this intermingling of Social Science methods with the texts, concerns, and analysis of Literary Studies […] might require an acknowledgement that the results may be messy or uncertain’. Like Heney, I too seek to embrace this methodological messiness, as well as to use this as an opportunity to learn more about my project which, at its heart, asks how we deal with uncertainty, how we cope with the unknown, and how we treat those who reveal the gaps in our knowledge. Jennifer Brea concludes her illuminating TED Talk, ‘What happens when you have a disease doctors can’t diagnose’ (2016), by emphasising the importance of listening to patients’ stories and reiterating the power of that short, simple phrase, ‘I don’t know’: ‘“I don’t know” is a beautiful thing. “I don’t know” is where discovery starts.’ And so, rather than fearing uncertainty, I aim to do as Brea suggests and ‘greet it with a sense of wonder’.
Katharine Cheston is a PhD student based at Durham University’s Institute for Medical Humanities and funded by the Wellcome Trust. She has previously volunteered for charities working with people living with poorly understood conditions, and also holds a master’s degree in English Literature (1900-present day) from the University of Oxford. She is on Twitter @kacheston.
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