So it’s about time I came out to you all. No not as a queer lesbian, if you haven’t worked that one out you probably haven’t been paying attention. I have come out several times to different people when I’ve moved to a different city, country, university, workplace or indeed social circle. This, however, is different. I very rarely come out to people as disabled. Those of you that know me through student politics may know I sit on the steering committee for the NUS Scotland Disabled Students’ campaign or if you know me from Stirling you might know I was involved in the Disabled Students’ Society for a while but unless you’ve been paying close attention or you’ve been involved too you might not even know that.
I’m going to hazard a guess you don’t what my disability is because I have a hidden disability and it often stays that way unless I have to come out about it. Today I’m going to do just that though. And like most things I do it’s for a cause and a campaign. This month is Crohn’s and Colitis awareness month and I’m going to talk about it because it’s something people should be talking about.
I have suffered from ulcerative colitis since I was diagnosed in 2005 age 17. In fact on my 17th birthday a Dr stuck his finger up my bum and thus began the diagnostic process. My father’s response on hearing this was “Did you enjoy it?”. Me: “No”. Papa H: “Well you can’t be gay then”. True story but that is another anecdote for another time and I’d like to point out how amusing I find this because now my Dad’s so accepting of my sexuality he tells me songs to listen to about gay shiz. Anyway, I digress.
You may not have known I have a disability but you’ve probably noticed its effects. If you’ve ever spent any length of time with me you’ll notice I go to the toilet all the fucking time. You’ve probably also noticed I drink more caffeine than is perhaps good for me because without it I get pretty tired. You’ve probably also all had me bail on you at the last minute when we’ve made plans (especially if they’ve involved food) often with a shitty excuse you haven’t believed. Now sometimes that’s because I’m flaky or perhaps I just don’t like you but more often than not it’s because my body’s decided a flare up of colitis is just what it wanted to do. Oh and those of you that have seen me more recently may have noticed I am getting even more mild illnesses than normal – this is because I’m on immunosuppressants because this disease means my immune system enjoys attacking itself. I like to imagine it like there’s a civil war going on. There’s a reason I’m not doing a science degree.
For those of you that are wondering there isn’t a cure for Crohn’s or colitis and it isnt contagious. You can get closer to the screen again. More worryingly it isn’t talked about enough and this lack of dialogue is having a negative impact on the career aspirations of young people with these diseases and on the productivity of workers that are reluctant to come out (interestingly to colleagues more than employers) about their illness. The NACC (National Association for Crohn’s and Colitis, also known as Crohn’s and Colitis UK) produced a report on IBD (the collective name for these illnesses, not to be confused with IBS) and employment last year that you can read here: http://www.crohnsandcolitis.org.uk/downloads/research/Crohns_Colitis_Employment.pdf
One of the recommendations of the document is that sufferers have their part to play in talking about IBD and the impact it has not just in the workplace but in the public sphere so that’s what this blog is all about. But that isn’t all, as always I want you to do something. The theme of this year’s Crohn’s and colitis awareness month is ‘Sport, Fitness and IBD’ – not really my specialist subject but for those of you that are interested there is a walk in London on May 26th and you can find out more on the NACC website?
However, my focus for this comes from reading Mostly Cloudy With Some Bright Spells by Juliette Wills which I’m going to be honest scared the literal bloody shit out of me. I’m aware I’m probably not the target audience for the autobiography which I presume is aimed at people that don’t suffer from the conditions she does to highlight what the problems are. As a reader who’s less than half the age of the author that suffers from colitis and a similar back problem to the one she does I found the book really negative and it didn’t fill me with confidence about my future but then I’m someone who tries to fart while inserting suppositories to see if they shoot out like a rocket so maybe we just have different attitudes to the disease and maturity levels.
While I would recommend it to people that don’t know much about IBD I wouldn’t recommend it to sufferers. I’d like to think that there are more positive stories to be told about IBD and we can start talking about the problems to encourage people to share their stories and change the world and opportunities for IBD sufferers. There is no need for young people to be less likely to aim for certain careers because of IBD and if we raise awareness about ways to make work places and practices more accessible for sufferers then this need not be the case.
So I want you to do something for me: I want you to talk about IBD. I want you to tweet about it, post a status on Facebook and bring it up at work. Also if you are interested in the sports activities get all over that chat but it isn’t something I’m interested in so I haven’t talked about it here (although there are 200,000 people in the UK unable to be as active as they want to be because of IBD so people who are more qualified to talk about sport should absolutely be doing so). I don’t really care what you say as long as you say something. May 19th is World IBD Day. That’s Saturday. So whether you’re at home for the weekend or you work weekends start talking about IBD and the people that are suffering in your workplace, those that never made it into work and those that were put off applying for the job.