Guest Writer - Jon

Honesty in IBD

My name is Jonathan Clarke and I have Ulcerative Colitis. Those are probably two of the most important things to know about who I am. Another important thing about me is that I have recently published a book about my experience with UC; but I'll come back to that. I've had to come an awfully long way to get the stage of writing about this illness.

Yup, that's me!

I was first diagnosed in 2010 while I was on my Gap Year. I had no inkling of the ramifications Colitis would have on my life at the time, and I had no clue about just how unwell this disease can make you. All I cared about really was that I was having regular, bloody diarrhoea, and I wanted it to stop.

If you had told me at the time that three years later I would be writing a blog about the disease, and wanting as many people as possible to read about it as possible, then I'd have thought you were on too many meds! I was embarrassed to the extent of mortified at the prospect of going to Uni and having to cope in secret with such an intrusive disease. I'd had a bad enough time breaching the subject with my parents.

Fast forward six months or so and I had already dropped out of Uni and was housebound. I had been forced to leave my new friends and girlfriend at the other end of the country and, the way I was then, it seemed like there was no end in sight. I was lonely, I was depressed, and I made it all worse by accepting these (all too common) traits of IBD. I would talk to my girlfriend on the phone about my trials and tribulations at home and it was she who finally suggested I write down all the things I was venting onto her. That night I opened my laptop and just started typing and I didn't stop for several hours and many thousands of words. I had composed a substantial diary of my time with UC including many anecdotes of my experience.

For much of that year Colitis dominated my life and I realised that I was going to have to get used to it. There was nothing to be gained from brooding or asking "why me?" and so I did what I should have done a year before, and opened up. I sent what I had written to my friends and family, most of whom I had avoided speaking to; simply because I had nothing nice to speak to them about. It was only once I started getting the responses that I realised what a disservice I had done to myself and those around me by choosing to be isolated.

This disease, as most people here will know, is hugely misunderstood. It's more than just a "bathroom illness" it is a systemic problem, and it was only by being honest with everyone that they could really appreciate that. And it's not just a physical disease, it's a psychological one too. The two sides of IBD are intrinsically linked however, and helping one side of the coin will translate to the other. I found it so frustrating that my consultants never asked me how I was coping mentally. It was only when I said that "today's been bad because I've had to leave the house" that any doctor treated me as patient, rather than a puzzle.

Colitis used to be something I would avoid talking about at all costs, but now I am frequently asked about, I am writing about it, and even joke about it. As I said at the start it's become part of who I am, not just a negative extension. My life improved drastically after doing something as simple as talking. My anxiety improved, my embarrassment was non-existent, and in fact I became as happy as I've ever been in my life.

Since then I have promoting my book to the wider public; and I have been shocked at just how frequent IBD is. You can read all the statistics you want, but until you start meeting fellow sufferers it doesn't mean anything real. I was amazed at how often upon hearing about my illness the response would be: "ah my Mum has that" or "my friend's been unwell too" and even "Me too!". The funny thing about the last one is how excited people are about meeting fellow sufferers. More often than not the reason is because they don't have to shy away from the gory details, they don't have to play down the extent of a flare up because they know I can relate and I know that what you see is not what you get with IBD. But from what I've learnt they shouldn't have to shy away from this with anyone.

It hasn't just been IBD sufferers who are keen to talk to me about my symptoms either. I regularly find people who have overlapping issues like bloody diarrhoea and who have not been diagnosed. Of course I urge these people to speak to their GP. If you can live with something it's all too easy to just accept it or even ignore it. Especially if the problem is an embarrassing one. But you will always find than being honest is never as daunting as you may think. They say that a problem shared is a problem halved; and they are right. When I got ill I thought that a problem shared is a problem spread; and of course I was wrong.

When I first wrote my book it was with the intention of spreading awareness through those 

closest to me. But the reason I continued writing (apart from the cathartic aspect) was because I had found out first-hand how important it is to spread awareness on a wider scale. I don't know if there are any more misunderstood or underestimated diseases out there, but there can't be many! Unless you live with it you will never fully understand, but reading about someone's personal experience is the next best thing.

The more honest you can be with those around you, the more comfortable your life will become; and that's a big factor in being healthy. And people will appreciate your honesty. 

There's no second guessing or wondering: they know.

If you want to find out what my experience was like then please visit this website: www.shituation.net where you can find out about me and my book and even order a copy for yourself or for a friend!

If you want to know more or have anything to ask at all then tweet me @Sh_thappensJC or find my own blog at jonclarke14.wordpress.com. And remember: talking helps. It may not stop you shitting; but it helps.