In January, I asked Stella Young, editor of Ramp Up, to define disability. I was facing drastic surgery, which would result in me wearing a stoma bag for at least three months. I wasn’t sure if wearing a stoma bag would make me a person with a disability. (I later found out that according to the government, I was disabled at this point.) Stella explained that in her view, disability meant an impairment that faces stigma or discrimination.
A stoma is when a small bowel sticks out of a person’s stomach. The functional equivalent of shit comes out of it. A stoma bag is worn over it. The bag is emptied throughout the day, and changed regularly.
I had a stoma bag because I was diagnosed with a condition called ulcerative colitis in March 2009. Ulcerative colitis (UC) is a condition which affects the large bowel. The primary symptom of ulcerative colitis is shitting blood. When I finally realised this was a serious issue, I was shitting blood about 10 times a day. I became very weak. Everything I ate passed straight through me.
I spent a lot of 2009 just recovering. I was on various medications, and for a while restricted mostly to bed rest. Because it’s a chronic condition, one of the things that can cause a flare up of UC is stress. Medication can treat it, and induce remission, but there is no medical cure. So people with UC have to avoid stress for the rest of their lives (except for those who have surgery). Piece of cake, right? Try to think how you might avoid stress for the rest of your life, and then think of the things that have stressed you out over the past year.
As time went on, my stomach continued flaring up, and my gastroenterologist had to keep on escalating my medication. Each medication had its own risks and side effects. One of them increased my risk of skin cancer, so I was advised to limit time spent in the sun. One of them made me moody. One gave me acne. Several of them suppressed my immune system, with the result that I would easily catch a cold, and then need antibiotics because it would naturally get worse. And then my stomach would flare up, and I’d need to increase my steroid dosage. I was on steroids almost continuously from 2009. I was warned this would result in the whittling away of my bones, and that’s what happened. Last year, I was diagnosed with osteopenia – mild osteoporosis. For most of the time I was on steroids, I was advised that I should not engage in most exercises. I had to stop going to gym, and was warned against using weights on my dosage of steroids.
Then there were the inconveniences. Mesasal tablets had to be taken two hours after, and half an hour before eating. Having it in the morning before breakfast was easy. Having it before dinner made, for example, grabbing coffee with a friend in the late afternoon or early evening impossible. The medications seemed to structure my day. I’d take Mesasal in the morning, then Pentasa suppositories, then shower. Then steroids and Imuran with breakfast. Then calcium supplements during the day some time. Mesasal again half an hour before dinner. Then, Salofalk enema before bed. And periodically, I’d go to the medical centre for four or five hours for infliximab infusions.
It was quite the regimen. And of course, it was of limited help. My stomach flared up semi-regularly, I couldn’t get off the steroids, and, eventually, I was in such a bad condition that I needed surgery. My surgery involved removing the large bowel and installing an internal pouch. This can be done in two or three steps when the surgery is urgent or semi-urgent. I was in the semi-urgent category.
My condition affected a great deal of my life. For example, I enrolled in law in 2010. This wise decision resulted in a great deal of stress. I would go on higher doses of medication, which sometimes would make it hard to focus. When my condition flared up, there would be urgency in going to the bathroom. This was a difficulty in my law school, which had one men’s toilet per floor. At the time I mostly didn’t even think of using the disabled bathrooms. When I eventually did, I felt guilty. What if someone in a wheelchair came by?
When I had evening lectures, or worked, I would go to the bathroom to take my medication. I kept my condition almost entirely private. I told very few people about it, even when doing so would have made my life easier (standing around awkwardly while everyone else ate, for example). When my stomach was uneasy, I would eat before joining people at a restaurant gathering, then explain I’d already eaten. People would sometimes suggest I was yet another broke uni student, and I’d gratefully tolerate the explanation. It seemed more acceptable to me than being someone with a medical condition. With my medical condition.
And so it dragged on for years. Some close friends and immediate family knew about my condition, but for the for the most part it remained private.
From 3 January until 15 February this year, I was in hospital. I hadn’t been to hospital since I was eight and didn’t expect to stay so long. I had thought that, like previous flare-ups, it would be handled quickly by medication. But that didn’t work. I was going to the bathroom 20–30 times a day in early January; after maximal medical treatment, it was 10–13 times.
Even then, I played it down, told people I was merely sick. To give an idea of the seriousness of the situation: I was regularly visited by a surgeon, who advised surgery, while also informing me that the mortality risk for surgery was 31 per cent. Even now, few people I know probably understand how dire my health situation was.
Recently, I began rethinking the privacy of my condition. One of the catalysts for me were some tweets from Jessie Taylor, a barrister, who has been a strong advocate for asylum seekers. She wrote: ‘ 2yrs ago today I had a colectomy’, because her Crohn’s/Colitis had gotten that bad. She continued: ‘These awful diseases are invisible, but ruin lives. We should talk about them more! I am very well now but I’m a lucky one.’
I took tremendous heart from these short tweets. I don’t entirely know what I’ll do with my life, but I would be quite happy if I followed in something like Jessie’s footpath. The admission also made me think a little more: if I had taken such comfort from what Jessie had written, why didn’t I behave similarly?
My privacy about my condition was uncharacteristic for me. I liked to think of myself as a left-wing troublemaker. I think, for instance, that it’s positive for gay people to come out of the closet, thereby making it harder for those around them to be prejudiced. As Glenn Greenwald writes, ‘as gay people came out of the closet, large numbers of Americans realized that anti-gay discrimination directly harms family members and other people they love and thus began to care about those harms, so a perceived self-interest was triggered that is lacking with other injustices’.
A while ago, I discussed feminism with a female friend. She said that she didn’t feel comfortable being perceived as an angry feminist. She wanted to seem more down to earth – perhaps more normal. Which in essence means, fitting in with the guys. I found this mentality rather difficult to understand. Why identify with guys being sexist, rather than with one’s own gender?
It occurred to me that in relation to my condition, I was behaving much like the woman trying to fit in with sexist guys. I wanted to be normal, and did not identify with my own medical condition, or with those who were in the same boat. I wanted to be normal, but didn’t consider my condition something normal people had.
This is part of why my discussion with Stella Young was, in a way, blackly comical. Stella told me that disabilities involve stigma, so I initially concluded that I didn’t have a disability, but might have one when I had the stoma bag. After all, what stigma was there in being sick?
It never occurred to me that there was, quite obviously, stigma. I mean, if there wasn’t, why couldn’t I tell people about it? Consider this analogy: if I was bound to a wheelchair but could hide that I was was, would I want to do so? I thought of obvious reasons for a ‘yes’: I wouldn’t want to be pitied, wouldn’t want to be treated differently. And that’s why I didn’t tell people about my condition.
I had surgery on 6 February. It removed 80 per cent of my large bowel, and ended with me having a stoma. I woke up with all kinds of tubes in me, and with a morphine button. Under the influence of morphine, I announced on Facebook and Twitter that I’d had UC, and now had a stoma bag.
While I doubted it at the time, I am no longer sure it was a bad decision. There is no shame in being unwell. Having a disability is nothing to be ashamed of.
I write about this as a classic case of the personal being political. James Charlton wrote in Nothing About Us Without Us about what he called the false consciousness and alienation of people with disabilities:
Most people with disabilities actually come to believe they are less normal, less capable than others … Society’s backward beliefs about and attitudes towards disability not only are society’s beliefs; they are internalised by most people with disabilities as well.
He argues that ‘the feeling of inferiority is the principal reason people with disabilities have not confronted and contested power and their own powerlessness’.
I kept my illness secret and stayed in the closet, much like I would’ve hidden a wheelchair if I had needed one, thinking in a similar way to many other people with disabilities think. So I have chosen a different path, and written about it here. I hope it encourages other people in similar situations to rethink how they relate to their conditions. Because this was the kind of spark that made a difference to me.