Many illnesses are complex, and too many health conditions – especially those primarily affecting cisgender women – lack the research funding that could unlock answers and reveal treatments. However, if I may butcher that oft-cited adage from George Orwell: many illnesses are poorly understood, but some illnesses are more poorly understood than others.
What do I mean when I talk of ‘complex, poorly-understood medical conditions’? Essentially, these are medical conditions which cause physical, bodily symptoms (which can be severe), but for which there is currently no accepted biomedical explanation. People with these conditions may find that test results repeatedly return ‘normal’ results – or that the abnormalities found on medical tests cannot explain all of their symptoms. They might receive a diagnostic label (placing their symptoms under acronyms including ME/CFS, FND, or IBS, among many others) or they might be left without a diagnosis. They may be told that their illness is ‘medically unexplained’, or that their symptoms are ‘functional’; they might be made to feel as if their symptoms are not genuine, or that their illness is all their fault. They might be told that their symptoms are psychosomatic, or the result of anxiety – but these explanations feel like an invalidation because they do not accurately reflect their lived experience. They might feel that their illness is seen as less real, less serious, because it lacks a distinct diagnostic biomarker. They might feel alone, misunderstood, misrepresented.
For example, someone who regularly experiences seizures – excruciatingly painful whole-body spasms – but whose MRI comes back clear and who is dismissed and disbelieved by neurologists, might think of their illness as complex and poorly-understood. So might someone who experiences severe gastrointestinal symptoms but who receives no answers from medical testing, and who is desperate to know what is really happening inside their body. I’m interested in hearing a broad range of stories from those who feel that this description of complex, poorly-understood medical conditions fits with their own experiences.
Does this working definition resonate with you? Would you perhaps have preferred other terms, or a different phrasing? Feel free to leave your own thoughts in a comment below – and if you identify as a woman, and you would be interested in taking part in an interview with me as part of my PhD project, you could also fill out this survey.
I have launched a survey where you can express an interest in taking part in an interview with me as part of my PhD project.
To share this information widely on social media, I made an image detailing the most important points:
The image contains a fair amount of text, and the image description was too long for image description boxes on social media e.g. Twitter. I have included the image description in full below:
This is an image consisting mainly of text. On the left hand side is a light blue textbox, which takes up approximately a third of the space. The rest of the image has a white background.
From left to right, the text reads:
My name is Katharine and I am doing a PhD because I want to understand how it feels to live with a medical condition which is not well understood.
This project was inspired by my own experiences of illness as well as by my work with charities and patient groups. I saw that many people with complex, poorly-understood medical conditions were suffering not only from the severity of their physical symptoms but also from the effects of stigma, shame and social exclusion.
I designed my PhD project because I want to help to change this.
There is a picture of Katharine to the right of this last line of text. Katharine – a white woman in her twenties – is smiling at the camera, she has dark hair which is swept slightly in front of her face. Just visible is her grey scarf and red coat.
The text continues on the right-hand side of the image. From the top, it reads:
Do you have experience of illness that is complex and that you feel medicine doesn’t fully understand?
Have you been made to feel stigmatised, or even ashamed, as a result of your illness?
Would you be happy to share your experiences with me?
I am conducting PhD research into women’s experiences of complex, poorly-understood medical conditions. As part of this research, I would like to interview women who live with these conditions so that I can hear about their experiences in their own words.
This project is funded by Wellcome, and it has received ethical approval from the Department of Anthropology Ethics Committee, Durham University.
To the right of this last line of text are two logos. The first is for Wellcome: this is a white capital W on a black square background, with small white text spelling out ‘Wellcome’ beneath it. The second is for Durham University: this has the Durham University crest to the left-hand side, with Durham University in black type.
On 7th October 2020, I gave a public lecture as part of Durham University’s Late Summer Lecture Series. The 2020 series carried the theme ‘Body and Mind’, and my presentation was entitled ‘The mind, the body, and the shadowlands in between’. I rerecorded the lecture in May 2021, using my original transcript and powerpoint presentation. I include the video, transcript and all references below.
In this lecture, I focus on the conjunction ‘and’: the connection between body and mind, and the stories we are told – and tell ourselves – about this connection. I argue that some of our assumptions about the connections between body and mind can harm those who live with what the clinical literature terms ‘medically unexplained symptoms’ – those who live with physical symptoms that scientific medicine does not yet fully understand. I discuss three memoirs published in the last twenty years: Suzanne O’Sullivan’s It’s All in Your Head (2015), Anna Lyndsey’s Girl in the Dark (2015) and Dorothy Wall’s Encounters with the Invisible (2005).
Watch the lecture on YouTube.
Transcript
This is a rerecording of a lecture entitled ‘The mind, the body, and the shadowlands in between’. It was originally given as a public lecture in September as part of Durham University’s Late Summer Lecture Series.
In this final lecture of the 2020 Late Summer Lecture Series, in which we have heard many fascinating papers around the theme of ‘Body and Mind’, I am going to focus on the conjunction ‘and’ – the connection between body and mind – and the stories we are told, and indeed tell ourselves, about this connection. The texts and ideas I will discuss might appear to extend beyond the boundaries of literary studies – but the idea of story (how we narrate experiences and – more broadly – how we make sense of the world around us) is central to what I will present over the next 25 minutes.
Medicine works in categories: through processes of referral, testing and diagnosis, it determines whether disease is present and (if so) which specialism – gynaecology, haematology, or psychiatry, for example – can most appropriately treat it. However, some cases defy discrete categorisation: These people’s symptoms persist unabated – fevers continue to flare, pain still shoots and stabs – but tests repeatedly return “normal” results, and the body remains an opaque mystery, its disease and dysfunction invisible to presently-available medical science. These are the inhabitants of what I term the ‘shadowlands’ of healthcare – and you’ll see that the ‘shadowlands’ metaphor is one I’ve borrowed from Julie Rehmeyer’s memoir Through the Shadowlands, in which she documents her experience of chronic fatigue syndrome – an illness, she says, science doesn’t understand. [1] So as to shine a light into these shadowlands, this paper focuses on three memoirs published in the last twenty years (one written by a neurologist, and two by women living with unexplained symptoms). I will argue that some of our assumptions about the connections between body and mind can harm those who reside in the shadowlands of healthcare, making them darker, the journey through them more difficult.
So, what do we mean when we talk about the connection between body and mind – that so-called ‘mind/body connection’? We can perhaps all think of experiences in our own lives that suggest such a connection – such as the effect of emotion on the body. Tears, for example, are the bodily expression of sadness – or indeed happiness or frustration. Blushing makes shame and embarrassment visible on the face. When we are nervous, we can feel shaky or nauseous – and who could forget the racing heartbeat triggered by fear?
These connections might seem obvious – but some make more extreme claims about the mind/body connection. Suzanne O’Sullivan’s memoir, It’s All in Your Head: True Stories of Imaginary Illness (published in 2015) is a good example. [2]O’Sullivan is a neurologist working in London. It’s All in Your Head was her first foray into published writing – and it was clearly a roaring success, winning the Wellcome Book Prize in 2016 (the award she holds in this picture).
O’Sullivan’s memoir is a mixture of autobiography and biography. In it, she details her own experiences as a consultant neurologist – but she also tells the stories of some of her patients, who experience symptoms including blindness, convulsions and paralysis. O’Sullivan has changed her patients’ names and identifying personal details, and the chapter titles bear the pseudonyms she has given them.
Those expecting neurologist O’Sullivan to discuss neurological health conditions in her memoir may be disappointed. From the very first page, O’Sullivan creates a clear distinction between illnesses that originate in the body, and illnesses that originate in the mind – and makes it clear that is the latter she is concerned with. Looking back on her decades in neurology, O’Sullivan writes: ‘I could not have predicted how far I would find myself drawn into the care of those whose illness originated not in the body, but in the mind.’ [3]
In O’Sullivan’s professional opinion, the patients she describes in her memoir ‘unconsciously think themselves ill’. [4]Their suffering is real but, according to O’Sullivan, it is caused by an unconscious mental process, rather than by biological disease. She describes her patients’ conditions as ‘psychosomatic disorders’ which she defines as ‘conditions in which a person suffers from significant physical symptoms […] out of proportion to that which can be explained by medical tests or physical examination. These are medical disorders like no others. They obey no rules. They can affect any part of the body. […] They are disorders of the imagination restricted only by the limits of the imagination. Think now of any physical symptom and, at some time, in some person, the mind has reproduced it.’ [5]
It is a fascinating concept – but it is not novel. Indeed, what O’Sullivan terms ‘disorders of the imagination’ could be said to date back to another neurologist, Sigmund Freud. Unfortunately, I have little time to dedicate to Freud so must instead offer the very briefest of summaries. Freud believed that many of his female patients had experienced some sort of trauma, which they were unable to consciously work through and, as such, had repressed. This repressed idea, or memory, is then converted into bodily symptoms, as the body expresses what the mind cannot.
By their very nature, concepts of repression and conversion are unprovable – and it would appear that no solid scientific evidence exists to either confirm or reject these hypotheses. Despite this, O’Sullivan refers explicitly to such Freudian ideas: ‘I have met many people whose sadness is so overwhelming that they cannot bear to feel it. In its place they develop physical disabilities. Against all logic, people’s subconscious selves choose to be crippled by convulsions or wheelchair-bound rather than experience the anguish that exists inside them.’ [6] Here, verbs – such as ‘they developphysical disabilities’, ‘people’s subconscious selves choose to be crippled’ – imply definite action on the part of the patients. Later, O’Sullivan refers to this process of conversion by name, writing of patients who deny feeling sadness or stress: ‘Perhaps those who deny stress do so because they do not feel stress, having converted it into something else.’ [7]
O’Sullivan paints an exciting, engaging and largely empathetic picture of psychosomatic conditions – and, naturally, I am not going to dismiss her expertise. She reports some impressive tales of recovery, and it is clear that some of her patients find her explanations very helpful. However, there are obvious issues with many of O’Sullivan’s claims. Many people who live in the ‘shadowlands’ of healthcare – including, evidently, many of O’Sullivan’s own patients – deny having ever suffered a traumatic experience and, therefore, they ardently reject the diagnosis of a psychosomatic disorder, which, they say, neither reflects nor represents their lived experience. However, these experiences neither deter O’Sullivan nor give her pause to reconsider her conclusions – indeed, she implies that there is always a psychological trigger – it is just that some patients may be ‘wholly unaware’ of it. [8] But is it not imprudent to conclude that if the cause of symptoms cannot be found using the limited medical tests doctors currently have at their disposal, then this person’s condition must be psychological? Must we really follow O’Sullivan’s example, and hear these stories not primarily as expressions of inexplicable bodily suffering, but as clues with which to uncover supposed psychological distress? Is it really the case that if the cause for symptoms cannot yet be found in the body, then this cause must lie in the mind? This logic relies on the assumption that scientific medicine knows everything there possibly is to know about the human body. Surely, the very fact that I speak to you now through my computer screen (and not in a room in Durham) suggests that this is incorrect.
Indeed, O’Sullivan’s claims are actually at odds with present diagnostic criteria. The American Psychiatric Association produces the Diagnostic and Statistical Manual of Mental Disorders (or DSM), which wields influence well beyond the borders of North America. The fifth and most recent edition of the DSM – which was published two years before O’Sullivan’s memoir, in 2013 – saw a distinct change in the categorisation of what O’Sullivan terms psychosomatic disorders. It states that ‘grounding a diagnosis on the absence of an explanation is problematic and reinforces mind-body dualism. It is not appropriate to give an individual a mental disorder diagnosis solely because a medical cause cannot be demonstrated.’ [9] It is certainly surprising that O’Sullivan should refer to the DSM as a ‘bible’ but remain apparently unaware of such a significant change. [10]
Again and again, however, O’Sullivan conflates absence of evidence with evidence of absence. She eschews uncertainty at every opportunity – and this is evident even at a grammatical level. One example is found on page 238, during a discussion of chronic fatigue syndrome. Controversially, O’Sullivan declares ‘I will not be obtuse. I believe that psychological factors and behavioural issues […] at the very least contribute in a significant way to prolonging the disability that occurs in chronic fatigue syndrome. Do I know that for certain? No, nobody does; but I am influenced by the lack of evidence for an organic disease.’ [11] O’Sullivan appears unable to let this uncertainty ring out for longer than necessary, following her admission ‘No, nobody does’ with a semi-colon, rather than the full-stop this sentence might appear to require. Her memoir exudes certainty, confidence, and authority – she adopts a tone that might appear unusual (or even unsuitable) for an area where little is certain. Yet one might wonder: would her memoir have been so popular, so well-received – would it, perhaps, have been awarded the Wellcome Book prize – had she acknowledged just how much remains unknown in this field?
Considering that many of O’Sullivan’s claims lack sufficient supporting evidence, fly in the face of current diagnostic criteria, and contradict lived experience, we might ask: why is her story so persuasive? Why do we, as readers, find this narrative – this idea of disorders of the imagination restricted only by the limits of the imagination – so appealing, so seductive? What do these stories achieve? I will return to these questions at the end of my presentation – and you might like to keep them in mind throughout what follows. I now want to consider whatstories like O’Sullivan’s might do, and how they might impact upon how we read (or indeed hear) other stories of unexplained illness.
I turn to two memoirs written by women living with severe symptoms for which no medical cause can presently be found. These are Anna Lyndsey’s Girl in the Dark (published in the UK in 2015) [12] and Dorothy Wall’s Encounters with the Invisible: Unseen Illness, Controversy, and Chronic Fatigue Syndrome (published on the opposite side of the Atlantic, ten years earlier). [13] Even a cursory glance at their titles will reveal the central importance of ideas of visibility and invisibility to these texts, written from within the ‘shadowlands’ of healthcare.
Anna Lyndsey – who has published this memoir under a pen name – was working as a civil servant in London when her life was suddenly interrupted by illness. A rare photosensitivity condition has forced her to become the Girl in the Dark, and her memoir details a life lived within the confines of a blacked-out bedroom. But she is also ‘in the dark’, so to speak, about the nature of her disease. Lyndsey’s symptoms are severe and completely disabling – but the cause of her extreme sensitivity to light remains unknown, and she regularly describes her condition as ‘mysterious’, referring for example to her ‘mysterious skin’. [14] Telling her story in chronological order is not an option for Lyndsey, who spends each and every day in the dark, so she instead expresses her experiences in ‘short sections, each focused on a different aspect of my dark life’. [15]
Dorothy Wall’s memoir, Encounters with the Invisible, also describes a life lived largely within the confines of a bedroom. Wall lives with the complex and controversial condition known as ‘Chronic Fatigue Syndrome’. Although the label might suggest mere tiredness, the symptoms Wall describes are serious and severe, including extreme pain and constant ‘flu-like symptoms – her throat so sore she declares it ‘a raw slice, like flesh peeled back’. [16]Encounters with the Invisible is both memoir and academic study, chronicling the ‘evolution of personal, public, and medical understanding of an illness’ as Wall interweaves glimpses into her own experience of chronic fatigue syndrome with well-researched insights into the history of the diagnosis. [17]
Considering the severity of their symptoms, we might wonder why Wall and Lyndsey put pen to paper. Indeed, Wall describes writing a book while ill as a ‘reckless venture’, and both authors acknowledge the considerable help they received from family and friends. [18] Wall’s partner did, she writes, an enormous amount of research, while Lyndsey – for whom the light emitted by a computer screen is simply unbearable – relied on friends to type up her words, ‘interpreting my curly handwriting and endless scrawled amendments’. [19]
Reckless though it may be, writing their respective memoirs certainly appears a necessary venture for both authors. Lyndsey seems to feel the need to speak up on behalf of ‘all who lead impossible lives’ [20], as well as to tell the story of resilience – of the persistent ‘flickering on of life’ [21] – that she herself desperately wanted to hear. In a similar vein, Wall concludes her introductory chapter by stating that she wrote her book ‘to illuminate these multi-layered struggles and to pull this illness from confusion, obscurity, and distortion, to make it visible.’ [22]
It is this last statement – the desperate wish to make their suffering visible – that, I feel, goes to the heart of the experience of living with unexplained symptoms. Wall sums this up eloquently: ‘To be seen is to exist, to have presence. The great fear of the ill is erasure, to be unseen in our suffering – invisible to science, tucked away in our bedrooms.’ [23] For Wall, Lyndsey, and other inhabitants of the shadowlands, this fear is realised: they are invisible to science. Medicine has no answers for them, so they cannot rely on scientific language (with its associated gravitas, its air of authority) to express their suffering. But memoir clearly offers Lyndsey and Wall an opportunity to make themselves seen – and I will look now at a few examples of how both authors employ metaphor in order to make their somatic (bodily) as well as social suffering visible.
Lyndsey’s and Wall’s symptoms are invisible to the naked eye: they display no visible lesions, no palpable swelling – or, as Lyndsey writes, ‘There are no blisters and no blotches – I am free of visible signs of conflict.’ [24] But their pains call out for presence, and words are one way to make their suffering visible – to make it exist in the minds of others. Both authors employ bold comparisons to fire, flame, and burning: apt metaphors to illuminate the painful realities of their lives in the shadowlands. Lyndsey describes her exposure to sunlight in the following terms: ‘agonisingly, with ever-increasing ferocity, over the whole covering of my body, I burn with invisible fire.’ [25] She repeats these burning images throughout her memoir, each time accumulating yet more striking comparisons, such as ‘when I sit in front of a computer screen, the skin on my face burns. […] Burns like the worst kind of sunburn. Burns like someone is holding a flame-thrower to my head.’ [26] Wall uses similar imagery, such as ‘My body is florid with pain, aches flaming through every muscle.’ [27] These shocking images of burning pain and flaming aches offer brief, powerful glimpses into Lyndsey’s and Wall’s pain, making it real to their readers.
But both authors also employ more subtle metaphors to express their social suffering: to articulate how their unexplained conditions impact upon how they are seen and perceived by others. In one short section entitled ‘Telephone Friends’, Lyndsey describes getting to know ‘other people in the strange club of the chronically ill. Like me, they had a life before that has been lost; now they wander in the twilight zone where doctors diagnose but cannot cure, and the faint miasma of societal suspicion, never attached to those with cancer, or with heart disease, hangs about them, that somehow it must all be psychosomatic, or that at a deep level they actually want to be ill.’ [28] It is a fascinating image: societal suspicion expressed as a ‘faint miasma’ that ‘hangs about them’ – like a visible mist, something that can be seen, felt, and even smelt.
Wall expresses similar statements. ‘Technological medicine, it seems, is all about seeing. These 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’. [29] The comparison between those graced by medical acceptance and those tainted by medical distrust evokes a moral judgement of character, while the connotations of ‘taint’ are similar to Lyndsey’s ‘miasma’: something contaminating, polluting; something that sticks and stains, and marks those it touches as in some way undesirable. Lyndsey and Wall both describe the experience of being seen through stigmatising labels, of being forever clouded by other people’s incorrect assumptions – and this renders the true realities of their suffering still more invisible.
In her 2017 documentary, ‘Unrest’ – which is currently available on Netflix – director Jennifer Brea, who shares the same diagnosis as Dorothy Wall, contends: ‘Sickness doesn’t terrify me. Death doesn’t terrify me. What terrifies me is that you can disappear because someone’s telling the wrong story about you.’ [30] This is, I believe, one of the most moving statements in the whole documentary – and the idea that disappearance might be akin to, or perhaps even worse than, death, is expressed by many who write of unexplained illness, including Dorothy Wall. But what, I wonder, might Brea mean by the ‘wrong story’? Is there, by implication, a ‘right’ story – and, if so, what might this be? I think this concept is a useful one to tie up many of the threads of this presentation.
And so, to draw to a conclusion, I turn finally to Lyndsey’s short section entitled simply ‘Metaphor’. In it, she describes an unfortunate experience with a reiki healer determined to uncover what she describes as ‘the deep reason’ behind Lyndsey’s illness. During her interrogation she suggests, for example, that Lyndsey perpetuates her illness because, deep down, Lyndsey believes that her relationship with her partner will only work if she is ill. Lyndsey exclaims that she wanted to leap from the bed and smash the woman in the face – before penning an altogether more contemplative reflection, which merits the following lengthy citations: ‘In such persons I diagnose a pathology of hypersignificance, an obsessive need to find meaning and pattern in human lives. Those afflicted with this disorder are psychologically unable to accept the extent to which we are embodied in physical reality, liable to be knocked about by the inheritance of some genetic susceptibility, by unwitting exposure to environmental risk factors, by the bizarre concatenations of chance.’ [31]Here, Lyndsey plays ironically with the language of the clinician and, in proposing her own diagnosis, turns the tables on those who are, she states, ‘psychologically unable’ to accept our embodied reality: that we have the bodies that we have, with their ‘messy fallibility of flesh’. [32] These stories – which might include those adopted by the neurologist O’Sullivan as well as by Lyndsey’s reiki healer – become, in Lyndsey’s admission, not just wrong, but pathological.
It is interesting that Lyndsey herself returns to the idea of story, as she continues her reflection with the following: ‘The novels of our lives are written only partly by ourselves; other forces regularly grab the pen, interpolating strange deviations and digressions, enforced changes of pace, character or plot.’ [33] Being unwell teaches us that we are not sole authors of the novels of our lives. Lyndsey expresses this stark reality on page 108 when she writes that ‘With casual brutality, illness reminds us of the limits of human will. At each stage of my decline, getting the first inklings of the next phase of horror, I would say to myself, repeatedly, “I will not let this happen.” And it happened, nonetheless.’ [34] But this is undoubtedly a lesson best learned through experience. Those who have not yet been forced to witness the limits of human will first-hand might instead hold onto a steadfast belief in the power of mind over body, or mind over matter. None of us want to accept the uncertainty of our physical reality. We may wish to avert our eyes from the fact that the next sentence in the novels of our lives may not be penned by us alone; that suddenly, and often with no warning, the plot can be driven off course by factors beyond our control. Instead, we might create or cling to stories that comfort us – stories that tell us that there is meaning in what is meaningless, and that make sense out of what is senseless. In what I believe might be the most insightful statement in the whole of her memoir, Suzanne O’Sullivan writes that ‘Modern society likes the idea that we can think ourselves better.’ [35] Is it easier for us to believe, therefore, that people like Lyndsey and Wall are unconsciously thinking themselves ill? Do stories like O’Sullivan’s perhaps protect us from having to face the true lack of control we have over our bodies: this ‘messy fallibility of flesh’?
Lyndsey concludes her short section, ‘Metaphor’ with the following, with which I will also conclude this presentation. Referring to these other forces that interfere in the stories of our lives, she writes: ‘But even while they are doing this, we retain some control over the quality of the prose. In the end we have one choice: to suffer well or to suffer badly, to reach for or to reject that quality which is termed, equally, by both religious and secular, grace.’ [36] And so, as listeners of these illness stories, and readers of the three memoirs I have discussed this evening, I ask: what choice do we have? Can we try to listen to stories whether roared or whispered from the shadowlands, without looking away from the inexplicable suffering they express? Can we sit with the uncertainty these stories contain, whilst letting go of other stories that comfort us, that protect us, that make us believe that we could never live these impossible lives? Can we hear these somatic mysteries without attempting to solve them? Can we resist the compulsion to make sense of experiences like Lyndsey’s and like Wall’s – to impose an ending, a conclusion, on tales of suffering that are so severe precisely because they have neither? Perhaps these are ways through which we might listen well to the stories told by those who suffer from unexplained conditions. So, if we, too, want to reach for that quality that is termed grace, perhaps we might instead choose silence over certainty; discover opportunity in mystery; and view the gaps in our knowledge as little more than evidence of our messy, imperfect, yet no less wonderful, human condition.
References
[1] Julie Rehmeyer, Through the Shadowlands: A Science Writer’s Odyssey into an Illness Science Doesn’t Understand (New York: Rodale, 2017).
[2] Suzanne O’Sullivan, It’s All in Your Head: True Stories of Imaginary Illness (London: Vintage, 2016). [First published by Chatto & Windus in 2015.]
[3] O’Sullivan, p. 2.
[4] O’Sullivan, p. 5.
[5] O’Sullivan, p. 6.
[6] O’Sullivan, p. 15.
[7] O’Sullivan, p. 243.
[8] O’Sullivan, p. 17.
[9] DSM
[10] O’Sullivan, p. 17.
[11] O’Sullivan, p. 238.
[12] Anna Lyndsey, Girl in the Dark (London: Bloomsbury, 2015).
[13] Dorothy Wall, Encounters with the Invisible: Unseen Illness, Controversy, and Chronic Fatigue Syndrome (Dallas, Texas: Southern Methodist University Press, 2005).
This reflective research blog begins with the immortal words of Joni Mitchell, which have also inspired its title:
I’ve looked at life from both sides now From win and lose, and still somehow It’s life’s illusions I recall I really don’t know life at all.
In September 2008 I caught a ‘flu-like virus and became very unwell very suddenly. My diagnosis was ME/CFS. I endured two extended periods of severe illness; most of my teenage years and my very early twenties were filled with formative experiences entirely different from my peers. In February 2016, following another ‘flu-like virus, my health returned. The onset of my illness, and my apparent recovery, were equally as sudden, equally as unexpected.
In September 2019, I started a PhD looking at experiences of illnesses which – like ME – are chronic, complex and contested: these are illnesses that cause severe physical symptoms, but which medical science does not yet understand. I’ve explored this topic from both sides – from patient and researcher – mixing the personal and the professional, the experiential with the theoretical.
And yet, in looking at this topic from both sides, I realise more and more that – like Joni – I really don’t know it at all. It may seem strange to go into a PhD accepting that you will never truly know this topic – that your own knowledge will always be incomplete. I’ve seen the harm that has been caused by the inability to tolerate what is unknown, unexplained, and uncertain; my PhD will not be the latest in a long series of attempts to explain what is currently deemed ‘medically unexplained’.
I write this reflective research blog to share my research with you, and to start a conversation – so that we might, together, view this topic from multiple sides and perspectives.
It’s December 2019, and I have a sore throat. It’s nothing serious, I tell myself, as I gulp water and suck Strepsils. Two weeks later, my throat still stubbornly sore, I contemplate a visit to the GP. I know the acronyms written all over my medical records – ME, CFS – and I know the reactions they receive; I stay home and take some paracetamol.
I wake on Christmas morning to find the joints in my fingers and toes are sore. By Gavin and Stacey’s Christmas Special, my wrists ache; by the New Year, I’m largely immobile, almost every joint in my body swollen and stiff. My sore throat is worse than ever, I’m feverish, and my skin is covered in a strange bumpy rash.
“I think you have… scarlet fever?” suggests one GP; a blood test confirms her suspicions. It turns out that two very rare complications of (untreated) tonsillitis are scarlet fever and reactive arthritis. I tick both boxes.
Early one drizzly February morning, I’m waiting for yet another blood test. The joints in my fingers are so swollen that I struggle to remove coat, scarf, jumper, and I cannot ball my fist as required. The nurse, wielding the needle, notices; she speaks with palpable kindness, placing her free hand gently on mine. I can’t remember her exact words, but I do remember the shock at being treated with such sympathy.
A week or so later, I sit opposite a new GP, our eyes upon the computer screen showing the results of my latest blood test. She takes me through all the abnormalities – there are many. We talk of autoantibodies, genetics, ALTs; we do not talk about anxiety, how much exercise I do in a week, or whether or not I have a boyfriend. The simple fact of my swollen joints was enough. This pain – unlike that pain – was not my fault.
A month later, the course of steroids finished, I feel much better.
It’s a tale of two illnesses. My body had now reacted to two different infections – the first viral, the second bacterial – leaving me with two different conditions, and two remarkably different illness experiences.
Katharine Cheston 