Richard Berry discusses the social taboo around the rarely discussed illness ulcerative colitis
This week Manchester United midfielder Darren Fletcher revealed that he suffers from ulcerative colitis, finally shedding light on the reasons for his mysterious absences from United team in recent months. Until now the club had blamed these on a ‘virus’, an explanation that seemed only to invite further speculation.
The only surprising aspect of Fletcher’s announcement, for me, was that he chose to reveal it at all. I was diagnosed with colitis in 2001, aged 18, and have kept it from everyone but close family. So far I have experienced only a relatively mild form of the condition, with long periods of normality in between occasional flare-ups. But the embarrassment involved in revealing it to anyone would, I am certain, be exactly the same.
Colitis is a condition in which the bowel becomes inflamed and ulcerated. Symptoms include diarrhoea, rectal bleeding, incontinence, nausea, loss of weight and appetite, fatigue, and abdominal pain. The causes of the disease are largely unknown, although there may be a genetic component.
The disease can be horrific and debilitating. In most cases, however, symptoms are experienced irregularly, with periods where few or none of them occur. This explains how Fletcher could have performed at the highest level on the football pitch for many years, and why he will be hopeful of being back there again before too long.
The treatment and investigation of colitis is far from pretty. First, there’s the finger. Every doctor you meet seems to feel obliged to stick his where the sun don’t shine, despite – as far as I can tell – the very limited utility of the practice. Worst is when you have to start doing the same to yourself, to insert suppositories or steroid foam, which squirted up through a thin plastic tube. At least I know that if the coming recession bites too hard, I can supplement my income by smuggling drugs through airports – I certainly have all the necessary skills and experience.
Then there’s the regular colonoscopy (and a similar procedure called a sigmoidoscopy), which is like all of the above rolled into one, but lasting much longer and captured for posterity on camera. These are more unpleasant than painful, although in my own experience this depends on the skill of the clinician. I was screaming in agony during one colonoscopy, when my doctor decided to let loose his trainee on my colon. At least I hope he was a trainee. He did it wearing jeans and trainers, which didn’t exactly breed confidence – I may have mentioned that in a foul-mouthed tirade I launched at him mid-procedure.
I don’t feel any personal shame in my affliction. The problem is, it’s impossible to talk about colitis without breaking a sizeable number of social taboos. Plenty of times I’ve been involved in conversations where people compare ailments – everyone has something wrong with them, it seems – and known for sure that I could one-up the lot of them if I wanted to. But I have always resisted temptation, because once colitis is out, there’s no going back.
Imagine if a friend told you they were suffering a bout of diarrhoea. Would you expect to have a conversation with them without mentioning it, or at least without thinking about it constantly? Not possible. As a temporary complaint, it is easy to laugh it off. But imagine if that friend told you they had diarrhoea all day, every day, and would do for the rest of their lives?
The reality might be less extreme than that, but there’s no escaping that implication. There’s a reason people don’t generally announce their bowel movements. “I need a poo” is far less polite, even, than it’s urinary equivalent. Except for in schoolboy comedy, this is an act we keep to ourselves. Reveal colitis to someone, and you might as well be telling them you need one all the time, even if you don’t.
Poo: a very important word, both noun and verb form. It’s what colitis is all about. But as a sufferer you won’t have heard it said very much at all. The language of the disease is euphemised at every opportunity. Sometimes this can make you feel like you’re in a Carry On film, especially when you hear a doctor talking about ‘inserting something in your back passage’. Other times it’s just confusing. Early on I remember being asked by a doctor if I had any ‘blood in my stool’: cue a rather awkward conversation while he explained precisely what my stool was, and where I could find it.
The euphemisms are meant to protect us from embarrassment, but I don’t think they help. They only feed the sense that what we have is something to hide. The lack of publicity for the disease reinforces this. Until this week, I couldn’t have named a single high-profile ambassador for colitis. Fletcher’s understandable decision to keep it to himself for so long suggests he doesn’t want to play this role himself, either. It is encouraging, however, that former England rugby union captain Lewis Moody has also recently spoken publicly about his own battle with the disease.
How different the status of many other conditions, particularly cancer. Without wanting to belittle how deadly or heartbreaking cancer can be, colitis sufferers can’t help but feel jealous when they see the huge publicity that surrounds celebrities’ announcements that they have it. In recent years one only has to think of Steve Jobs, Kylie Minogue, Michael Douglas, or Jade Goody, each applauded for their heroism and for having ‘raised awareness’ of the disease, as if that were necessary.
Before this article, I only ever came close to telling someone outside my family on one occasion. Not long after I first developed the symptoms, I started to describe what was going on to a close friend. Horror spread across his face almost instantly, and I decided to laugh it off and change the subject, letting him believe it was a fleeting complaint, and nothing to worry about.
At work, I simply refuse to explain to my bosses when I request time off. Once I even had to miss an away day for my entire department, when we were going out tree-planting. Despite my usual enthusiasm for saving the planet, I was in the midst of a flare-up, meaning that being so far from a toilet was inadvisable. Usually a wooded area is godsend when the need arises, but on this occasion I wasn’t going to risk becoming water cooler fodder after being caught in the act by my co-workers. I’m sure the secrecy has left me open to all kinds of suspicion, although it seems Sir Alex Ferguson is sympathetic in Fletcher’s case – he has got rid plenty of players for less – so perhaps there’s some hope.