Way back in December before PhDisabled had to take it’s own break for some self-care, we recieved this post from @Lykarar. While the various events that happened then have now passed, everything the author says still warrants consideration.
3 December was International Day of Persons with Disabilities; 1-7 December is Crohn’s and Colitis Awareness Week (in the USA); and 22 November – 22 December is Disability History Month (in the UK). This cluster of events has had me thinking about health and disability even more than I usually do, mostly because I’ve been talking about these issues more and having better conversations about them. These officially ratified events seem to have made it easier for friends to ask questions and for me to answer more fully and un-self-consciously. So, in that spirit: let’s talk about pain and celebration.
While I was writing up my MA in the summer of 2008, I felt really unwell. I started suffering car-sickness even though I’d never had it before, was constantly light-headed and nauseated, frequently lost my balance and did embarrassing things like topple over or walk into doorways instead of through them, and had motion sickness so severe that I couldn’t even sit up in bed without my head spinning. At my worst point, I fell down the stairs and broke my coccyx – an injury that I literally tried to walk off rather than show pain.
Despite how wretched I felt, I tried to carry on with my dissertation as though nothing was wrong. I didn’t say anything to my supervisor because I blamed all of my symptoms on stress, laziness, or clumsiness. Disappointing my supervisor was something I feared and dreaded so much that worrying about it made me even more ill.
My doctor eventually diagnosed me with coeliac disease (thanks to a completely random comment I made one day about how rye bread burned my lips and tasted spicy), a diagnosis that was delayed because of my atypical symptoms. My supervisor and university were incredibly kind to me and allowed a retroactive leave of absence to cover the summer months when I’d been too ill to work: normal blood shows ferritin levels anywhere between 12-200 mcg/L whereas my blood at the time of diagnosis did not register any iron at all.
Coeliac disease is not a disability, of course, but I set a truly terrible precedent for myself that year. Trying to behave as though you’re not in pain may be culturally celebrated but is, in point of fact, a silly thing to do. Finishing a graduate degree on time (or even under time!) may be academically celebrated but is, for many people, impossible. When I was lucky enough to win funding for my PhD, I promised myself and my supervisor that I would finish in the allotted three years.
In the summer of 2011, I fell ill again. I specifically remember that my symptoms started on the morning of 1 August because we were meant to be moving house that day and my poor husband had to handle everything while I was lying on the floor of the bathroom with flu-like symptoms, a high fever, and so much pain. An invisible hand had reached into me, gathered my intestines up in a fist, and started cruelly squeezing and twisting my innards. It felt like I had eaten glass shards that were slicing their way through my abdomen. Stabbing pains would come so quickly that they would take my breath away and double me over. I spent hours pacing back and forth because moving seemed to ease the pain more than lying down did. I had terrible diarrhoea and felt horrible for about a month, all while I and my doctors assumed that I had a bad case of food poisoning. When the case was finally passed on to my gastrointestinal specialist because I hadn’t improved with time, he brought me in for a colonoscopy and found more than two dozen bleeding ulcers all through my lower intestine. My official Crohn’s Disease diagnosis came in October.
Had I learned nothing? I was walking around with dozens of ulcers and trying to act like things were fine. I was attempting something as complicated and all-consuming as a PhD while going sleepless due to pain and cramming GP visits into a schedule that was already packed. I was scrambling to meet deadlines even though I could no longer control my body, much less my time.
Actually, I had learned a lot. I’d learned that it is mortifying to see your friends and classmates graduate ahead of you. That admitting to pain means a lot of paperwork while you’re still unwell, and lots of letters from your GP to your department filled with embarrassing medical details. That any illness having to do with the intestinal tract makes people uncomfortable. That the academics who are celebrated are the ones who carried on and persevered, not the ones who took leaves of absence, or went part-time, or ran out of funding. That my chronic illness was more than just a personal problem: it was an educational roadblock, an immigration hurdle, and an impediment to future employment.
And on top of all that, there was still all this pain. Doctors put me on steroids and I gained 20 kg in just 10 days, which was excruciating. My legs hurt so much that I couldn’t walk for more than a few minutes before sitting down and crying (no matter where I was, including on the side of the road or in the middle of a park path). I now require regular blood tests (and less regular IVs) but have difficult veins, so can be poked with a needle up to seven times across both arms and hands in a single sitting. The nausea I suffer from can be so intense that it is painful as well as sickening. I’ve become an expert on how to describe different kinds of abdominal pain to doctors: stabbing, stretching, cramping vs. spasming, tearing, twisting, burning, stinging, gnawing, aching vs. throbbing, tightening, sore, itchy, sharp vs. dull, and (my personal favourite) crippling.
A more nuanced vocabulary about pain hasn’t helped me communicate about my disease any better with my university, though. Pain is exhausting and embarrassing, and it compromises my (public and self-)image as a whole person who is able to tackle challenges just when I’m trying to build up a professional reputation as a hardworking and innovative scholar. It might be an unstated standard, but everyone knows that it is shameful to let personal circumstances interfere with research or deadlines.
Pain is very costly. For those of us who have chronic illnesses or disabilities, there’s the added aspect of knowing that however well you may be doing at this moment, there will be another moment in the future where you will be brought low.
So I had a particularly strong reaction when I read this post from Hannah Paterson (NUS Disabled Students’ Officer) about International Day of Persons with Disabilities. There’s a lot to like about what she says and I am very proud of the National Union of Students’ for actively campaigning on issues affecting students with disabilities, but I can’t bring myself to agree with her exhortation that we ‘celebrate being disabled’ or ‘celebrate disability’. Thank you, but no. Crohn’s Disease is terrible, as are the things it has done to my life. I decline the invitation to celebrate agonising pain. I shan’t be celebrating the anal sphincter spasms that prevent me from working and are so humiliating that I can’t even explain to my supervisor what it is that’s been impeding my productivity. I won’t celebrate the times I’ve held very still and only taken slow, shallow breaths to avoid moving my abdominal muscles any more than necessary. I refuse to celebrate the time I went to Accident and Emergency screaming in pain only to be ignored for ‘drug-seeking behaviour’ then dismissed as ‘a bad case of flu’.
None of which is to say that I haven’t found things to celebrate since my diagnosis. I prefer, however, to celebrate diversity, accessibility, opportunity, and inclusion. I celebrate people who happen to have disabilities rather than the disabilities themselves. Can’t we use an opportunity like International Day of Persons with Disabilities to share competing narratives in which students and researchers with disabilities and chronic illnesses are lifted up as role models even if they did unthinkable things like take time out or admit when they were in pain? Silent and stoic sufferers who overcome adversity by never acknowledging it are not helpful exemplars. My PhD journey would surely have been different if I’d heard just as much about successful scholars who have disabilities as I did about rising star postdocs who publish 2 books a year and survive on nothing more than 3 hours of sleep and a bowl full of ambition for breakfast.
Lykara is a PhD student at The University of Sheffield, currently taking her second medical leave of absence. She researches conlangs (constructed languages) and keeps a wary eye on UK immigration legislation. You can tweet her at @lykarar.
Would you like to share your story, perspectives or arguments about disability, chronic illness and the PhD? Email us at firstname.lastname@example.org.
Image: ‘Pain’ by Bridget H., licensed under Creative Commons Attribution 2.o. View the original here.