I am beginning this on a bad day. Not the worst kind of bad day – I am, after all, typing, and therefore thinking, albeit slowly, sludgily. How to describe this? Each time I try, I express it differently. Today it is as though my brain is a cautious thing; a wounded animal wary of further injury. It looks through my eyes, resting on individual objects, pausing for breath. Draped over the back of the chair beneath the open window is the kurta I wore yesterday. It is chikan – the style of embroidery unique to Lucknow, North India’s city of poetry and kababs and political violence. My brain is transfixed by the wide-petalled flowers sewn with thick red thread into white cotton that glows in the light from the window.
I wore the kurta yesterday, when I was moved to see a young man having his photo taken as he stretched to touch the foot of an enormous statue of the Dalit leader B.R. Ambedkar. The image felt particularly potent coming as it did a few days before the Uttar Pradesh election results, which some feared will deliver India’s most populous state into the hands of its Hindu majoritarian central government (as indeed came to pass).
The kurta looks as though it belongs to someone else, because yesterday was a good day, and therefore I was different. Good days are best defined as those when things feel possible. When I am limber and interested and rich with ideas. Today my body is heavy, a headache lurks in my jaw, and my legs fizz, hotly, as though the blood has been carbonated. This is my twenty-first year with Myalgic Encephalomyelitis (ME). As I watch, the flowers seem to float above the fabric. Through the window I can hear the excited chat of bulbuls, and the sustained horn of a train.
There are at least 250,000 of us with ME in the UK, and an estimated 17–20 million worldwide, the majority of whom remain undiagnosed. Someone diagnosed in Britain today is likely to be subject to the combination of cognitive behaviour therapy (CBT) and graded exercise therapy (GET) that constitutes the management model that GPs are taught to follow. This ‘biopsychosocial’ protocol was given a boost by the publication of the results of the PACE trial by The Lancet in 2011, and Psychological Medicine in 2013. Claiming impressive recovery rates for patients who underwent CBT and GET, the study garnered claiming that , reinvigorating a longstanding public perception of the illness as psychosomatic. The multiple flaws in the trial which undermine its claims have since been exposed, and PACE has been dismissed by leading scientists around the world as duplicitous, dangerous, and a case study of bad science.
I have the paradoxical good fortune of my illness pre-dating the CBT/GET protocol – by the time it was instituted I had long stopped expecting care from the medical establishment. No one escapes, however, the dogma that fear and self-limiting beliefs prevent recovery. As my illness has ebbed and flowed, I have lived in five countries, worked in a variety of jobs, and gained three degrees. I do not harbour self-limiting beliefs, but I am pestered by vestiges of guilt and shame, and an enduring anxiety that I am disbelieved. This, together with a rage that renders me mute.
As I stand on the threshold of an academic career, I feel the anxiety rearing its head. Is it possible to thrive in this world as a person with a chronic illness, rather than as someone who studies illness in the lives of others? Or as someone who espouses both positions? When job adverts encourage people with disabilities to apply, do they mean me? How many future colleagues and managers have internalised the view that ME is psychosomatic? These questions and others begin to bubble.
My fear of the next step is not the product of self-limiting beliefs, as the psychiatric lobby and its media allies would have you believe. Rather, the opposite. It is a painfully accumulated, self-preserving knowledge that I am constantly relearning: I have a disease that imposes limitations that I cannot overcome by force of will. But as much as I know this, I also know the excitement of being well enough for ambition to stir. And during those periods, recalling the depths of illness (among which I may awake tomorrow, lost) is as difficult as imagining winter temperatures while on the beach in summer. Given this self-deception, I have a history of running into walls, only to be somehow shocked (time and time again) when my body shatters on contact. Is it possible in today’s academia to stop short of the wall?
I fear a horrible reckoning, if the environment that produces scholarship about life in all its complexity proves unable to support the complex lives and bodies of its workers. As we hear more and more about modern academia’s toll on mental health, the cognitive dissonance is on full display. How will we improve conditions for society’s physically, neurologically, immunologically different people, if we cannot do so within universities? This is not idealism, but critique of a structure that enables the well to study the chronically unwell, but finds it difficult to accommodate the latter within its own ranks.
Universities are not monolithic, of course. During my PhD, I received excellent support from the King’s College London disability service, at the same time as the university (along with QMUL) spent money on repeated refusals to release anonymised PACE trial data for reanalysis, citing the freedom of information requests as ‘vexatious’. Institutional support systems are, however, easily undermined by individuals with their own, sometimes unconscious, perceptions of disability and chronic illness. The vicissitudes of ME made me a ‘vexatious’ student in the eyes of the individual who told me to ‘pick up the pace’ and responded to my explanation with the statement: ‘This is not about your health.’ I completed my PhD in four years without a serious relapse because I ignored this person. But when overruling authority for the sake of one’s well-being becomes the norm, it becomes an additional symptom to be managed among an already bewildering constellation.
On the other hand, supportive and flexible environments are implemented and sustained by individuals who combine to produce unique departmental cultures. These people value and promote the connection between enabling various forms of ability and the production of rich research and insightful teaching from a variety of perspectives. They also understand the importance of students seeing themselves reflected among faculty. Such people make all the difference, both within and without the university. Happily, there are many of them, some of whom I have been fortunate to encounter during my route to this current juncture. But it troubles me to have to rely on fortune for a viable academic future, to a greater extent than my equivalent unhindered by the capricious solipsism of chronic illness.
On good days, I am excited.
Anna Ruddock is an anthropologist of health and medicine with a regional focus on India. She tweets at @annalouruddock.