When you’re sick in the UK, you don’t have to tell your employer how you’re sick. So when I became ill while living and working in London in May 2009, nobody at work knew exactly what was wrong, and I didn’t intend to tell anyone.
I have a chronic condition called ulcerative colitis, which was diagnosed in 2005. Ulcerative colitis, or UC as those in the know call it, is a type of inflammatory bowel disease (IBD). In my experience, few people have heard of it, but most people have heard of its big brother, Crohn’s disease. There’s no real consensus as to what causes it, but an overactive immune system is the usual scapegoat. It seems that my body doesn’t recognize my large intestine as belonging to it, so it randomly attacks it. The result is ulcers, bloating, severe abdominal pain, and internal bleeding. Left alone long enough, it can be fatal in several different ways—malnutrition, dehydration, and bowel perforation can all occur. In the short term, it’s painful and embarrassing. Imagine having really severe food poisoning. Imagine it much worse. Imagine it not stopping.
Obviously, it’s kind of a gross disease, so I used to gloss over what exactly was wrong with me. This was always a fairly easy task, because I spent long stretches of time in remission. My own fiance didn’t even know exactly why I took medication until 2009. When one of them stopped working, and I started to get sick.
It took me longer than it should have to go and see my doctor when I realized my remission was over. I was optimistic, I was an idiot, and I thought maybe this time it would just go away on its own. Unsurprisingly, it did not. Instead it got worse, and I had to face up to the fact that my blissful two-year-long remission had come to an end.
I took a few days off work and made an appointment with the doctor, begging for better drugs. He gave me prednisone, a corticosteroid that doesn’t fit the ‘better’ descriptor. It’s an awful drug that causes bloating (yes, more), water retention, insatiable hunger, weight gain, excess hair growth, and mood swings. Ghastly, but effective. A simple course of prednisone had always sorted out other minor flare-ups for me before, so I willingly started on my usual ‘fix this’ dose. It worked. I started to get better, and missed only a few days of work.
You can’t just come straight off prednisone, so after a couple of weeks I began the scaling-down process, becoming teary, hairy, and fat along the way, but mostly doing fine. I was able to go to work, and I was able to work while I was there, and generally, life was good.
But then I started to flare again, and had to miss a couple more days. I talked to my doctor and upped my dosage. I talked to my doctor and scaled back down. I got sick. I missed more work. I tried scaling down more, and I was fine; I scaled down even more, and I got sick. Underneath the water weight I was fast becoming stick-like, 10 to 15lbs down on my usual weight because I wasn’t absorbing any nutrients from my food. The hair on my head started to fall out, but the hair on my face grew undeterred. I couldn’t walk up a flight of stairs in one go.
But I still didn’t say anything at work.
I intentionally kept it vague, even with the good friends I had at work. They didn’t push, but must have been incredibly concerned. But I was really reluctant to tell anyone anything—both due to the ‘ew’ factor, and the simple fact that I was scared. In 2009, the recession was biting London hard, and though nobody was saying anything, we all knew our company was feeling it. There had already been redundancies, and anybody who left of their own accord wasn’t replaced. The atmosphere at work was strained and snappy. I didn’t wish to appear to be the weakest link.
This strategy worked well until September, when a colonoscopy revealed what we already knew—I was very badly sick. All that medication hadn’t even touched the ulcers, and I was at risk of bowel perforation. My prednisone dosage was immediately upped to the highest dose I’d ever been given, and the doctors started throwing around the idea of surgery.
Around this time I finally got up the nerve to sit down with the big boss and my direct manager and let them know that I wasn’t doing well, and that I was probably also facing another few months of not doing well. I had no choice, but it was not a good meeting. I was so wound up I almost cried when telling them, and while they said all the right things, the added burden on an already-understaffed company was an obviously unwelcome one.
I made it clear that while there were days I simply couldn’t come into the office, I was able to work from home. They agreed, and this worked well until the day that my manager told me she didn’t want me doing that anymore. She said she’d prefer I took sick days instead, but actually, her tone made clear, she’d prefer I was just healthy and in the office every day like everyone else. I had plenty of sick days to take—the UK is generous in terms of paid sick leave—but I didn’t want to use them. I wanted to work. I didn’t want excuses made for me, or by me, and I certainly didn’t want anyone to think I was taking advantage.
So I went into the office and worked, day after day, through everything. One day I woke up and I couldn’t bend my knees. The joints were too swollen and stiff. Despite this, I was laughing as I called in to let my colleagues know that I would be late, because I couldn’t get out of bed. How else are you meant to react when you’re 25 and temporarily arthritic, and you are, once again, letting down the people who rely on you? It was the worst. The other worst was that I wasn’t allowed caffeine, and I was perpetually exhausted. All I wanted was coffee. The other other worst was that I was ugly. It sounds ridiculous, considering how many other things I had to worry about, but my face was bloated beyond recognition, my skin was flaky, and I had lost about a third of my hair completely. Every time I saw myself I was suddenly and unpleasantly reminded that I was ill—and I knew that every time my colleagues and clients saw me, they were reminded of the same thing.
Eventually I quit my job. There were reasons to do so beyond my health (or lack thereof), but it was certainly a part. Eventually it was clear that the prednisone didn’t work for me, even at the highest dose. A year after my symptoms first came back, I had a short hospital stay, a few blood transfusions, and an infusion of an immunosuppressant called Remicade. It worked, but it took months. I’m extremely grateful that I could get away with freelancing during this time.
It’s now nearly three years since I started on Remicade, and I am still—touch wood—in remission. I’m also still a freelancer, although with the recent end of a big contract, I’m starting to consider a permanent position again. It’s a scary proposition.
My hope is that I wouldn’t play the martyr again. That I’m older and wiser and braver now. That I would take the leave I’m entitled to if I were to get sick again. That I would give myself a chance to get better. But I’m not sure that I would. Though I’m much, much more likely to tell people about my illness now (and write about it on the internet!), I still feel that it’s a very large hindrance to permanent, full-time work. I feel that chronic illness is viewed with overwhelming negativity in the workplace, regardless of laws which forbid discrimination against it. So, for now, I look—and have my fingers crossed that I stay in remission.