Wherever I go and no matter what I do there is always one thing you can find with me- a slightly battered black rucksack.
Inside you’ll find the normal things you would expect for a student; books from the library, paper for lectures, keys to get home. However, you’ll also find a number of pills and a spare pair of jeans and underwear.
Just in case I poop myself. Because for me that is just a fact of life. My name is Steven and I have Ulcerative Colitis.
Now I’m betting many of you will have stopped listening. I said poo, that’s officially too disgusting and you don’t want to know. But please keep reading because I believe understanding is the most powerful thing people can do. Not to pity them, but to understand how strong these people are.
“You don’t look ill.”
So the basics- Ulcerative Colitis is a chronic condition that is also largely invisible and therefore almost entirely hidden and unspoken in society.
It essentially means that my immune system (bless it) has gotten quite confused and essentially thinks parts of my gut are infections meaning that occasionally it starts to attack my colon causing ulcers to form inside it. As a result the ‘bodily waste’ passing through the Colon every day ends up passing through quite a lot quicker, picking up some blood along the way.
I was first diagnosed three years ago, quite typical apparently, just before my A-Level exams. Fun times.
When you tell someone they have a chronic condition something weird happens. Somehow, some temporal anomaly opens up which seems to distort that word into ‘incurable’. What is more difficult is that at the moment it is very difficult to counter this. Sufferers can take medication or alter their diet to reduce the likelihood of it happening but there is no magic pill that can just take it all away.
I know I’m not alone in this. The figures say at least 260,000 people have Inflamatory Bowel Disease, the wider name for Ulcerative Colitis and its (for want of a better word) ‘sister’ condition Crohn’s Disease. But when nobody wants to hear about it, it subsequently means nobody talks about it and so you quickly loose the sense that others are like you.
“Just deal with it.”
This may sound hard to believe but I am exceptionally lucky. I have only moderate UC; if it were more severe then I would have to kiss goodbye to my colon altogether. If you do an image search for UC or Crohn’s then chances are the first pictures of actual people will be people with their colon removed. Equally I am living in a country that is affluent so I can get access to medication relatively easily.
So what is it like to live with UC?
Simply life goes on. The best way to describe it comes from YouTuber Hank Green (one half of VlogBrothers and a UC sufferer) who describes coping with UC as a “new normal”. You get diagnosed and immediately you know that life has to go on around it.
Every day I take medications, currently at around 9 a day, which mean I generally stay healthy and that I have lower odds of having a flare-up. Unfortunately the way they keep me healthy is by disabling some parts of my immune system meaning I catch things like cold and flu stupidly easily. Moreover I have to be really careful in good weather as one of the medicine’s side effects involves an increased possibility of getting cancer, because it affects the way the body blocks UV rays. I don’t tan anymore, just burn.
On top of this, sufferers of chronic conditions are not exempt from the NHS prescription charge which rises so much I can never keep track of how much it is (currently £8.20 per medicine).
In reality, these are merely inconveniences compared to the larger problem.
Picture this; I am sat in the library doing a minor activity otherwise known as my degree and I get an urge. I need to go, right now. The comedian Lee Evans describes it best (admittedly he was talking about something else but it’s the best description). My life has just become a challenge, like The Cube. You have 30 seconds to get to the nearest bog, do you accept? And in this game, no is not an answer. I have to drop everything and just run and hope that the good folk of Hartley don’t steal my stuff or my seat. It’s always a close run thing and sometimes I don’t make it. That just happens I’m afraid, nothing I can do about it.
This happens most during flare-up season and despite all my medication there always seems to be one right before Christmas (call it my Christmas present to myself). Its relation on the other hand happens all year round- bad wind. This one gives no warning and, when it does arrive, it can cause people to check their shoes for muck. Sorry about that.
The light at the end of the tunnel.
Some live in hope of a cure. I see it as something that would be nice, but the realist in me always says how unlikely that would be. IBD is not a death sentence and by its nature it is embarrassing to talk about. After all, when nobody knows then not many donate to fund research. I decided to not think about it and just live in the mean time. After all UC hasn’t hurt Sir Steve Redgrave, Britain’s greatest Olympian, and apparently the list of sufferers even extends to include JFK.
If you’re an IBD sufferer out there then know that it’s not hopeless, you’re not alone and, as weird as it may sound, life goes on. Under the Equality Act 2010, employers and institutions (such as the uni) have to accommodate you as best they can and there are services out there to support you.
If you’re lucky enough to not suffer from IBD then I only ask one thing: not to judge. If you see something that annoys you, like jumping a queue to the toilets or a seemingly able-bodied person using a disabled toilet then please don’t judge. Because it could be the case that the alternative is much worse.
When describing symptoms, it is worth noting that I am massively simplifying and the aforementioned are not the same for everyone. You can find out more about IBD, learn about current research or get support from Crohn’s and Colitis UK.