When I was diagnosed with Ulcerative Colitis, I remember feeling quite relieved. I’d experienced some very minor symptoms, jumped through the hoops of awkward doctor assessments and no more than 3 months later I had my own consultant and a letter to take home. In that respect, I was pretty lucky. It can take some people years to get a diagnosis and even longer to get taken seriously. But there were a few other reasons behind my relief…
Firstly, I didn’t have Crohns – something that to this day, I am told I should be grateful for. “That’s the worst of the two, right?” (Please don’t get me wrong, this is not a competition!)
Secondly, I finally had the novelty of an actual medical condition to attach to my symptoms, like an NHS-branded badge that I could whip out each time I had fatigue or a stomach ache.
And last and luckiest of all, I was given medication that worked like an absolute dream. 1g of mesalazine twice a day and I was thrown into remission quicker than I could say: “It’s a miracle!”
But three years and two hospital admissions later, here I am having totalled up more sick days than I bear to think about with a body that has rejected every single immunosuppressant, biologic and steroid it’s been given. I’m now left with two options: a clinical trial of an new biologic or the ileostomy operation. For now, I’ve opted with the trial.
Inflammatory Bowel Disease is unpredictable, it’s hard and it’s unkind. But we know this. Is there anything good we can take from it… at all? I actually think there is. My twenties so far have definitely been a huge challenge. But, despite this, I’ve been exposed to more and learnt more about myself than I ever could have without this disease. I’m not grateful for the illness, but I’m grateful for the lessons. Here’s why:
I love this one. It makes me feel like I know a secret that no-one else does. On a daily basis, I actively question everything with: ‘Does it really matter? Really?’ And by this I mean, in the grand scheme of things. I used to go down the rabbit hole of panic and stress about near enough anything before my diagnosis. If someone offended me, I’d be wound up for days. If my boss wasn’t happy with me about something, I’d mull it over and over in head. But, if you simply remind yourself that you’ve got bigger things going on, things that are actually real and do matter, rather than this relentless white noise of life, then a lot of your stress does actually fade into the background. Stress isn’t good for us, so it is an incredibly useful skill in dealing with things.
The IBD community
It’s true when they say that if you look for help, you’ll find it. I’ve been overwhelmed by the amount of support you can find online just through fellow sufferers, be that those with crohns and colitis, or any other invisible illness. Over 300,000 of us in the UK have this condition and a lot of us are just out here trying to find and support one another. There’s facebook groups for near enough every medication, be it Humira, Azathioprine or Xelianz, and they are full of people who just ‘get it’. Whether you want useful information and tips or just to simply have a judgement free rant about how shit it all is, I can’t recommend them more highly.
But when you take it offline, it is even better. Going to a physical meet-up was always something I knew I wanted to do, but put off for a long time due to social anxiety. A couple of weeks ago, I went along to an event organised by a IBD blogger. I can’t tell you how glad I am that I did. Everyone was incredibly open and friendly and I came away with some really valuable insight into what others go through and the methods they use to cope. Looking at our table of young, happy and ‘healthy-looking’ people, you never would have guessed that we were all sharing this chronic illness. Another thing we shared though, is that we weren’t letting it take over our lives.
Finding genuine people
My family and closest friends have given me endless time and support, all while being open about the fact that they don’t know how it feels. I am so grateful for them. Even my workplace have been understanding, letting me have the space and time I need without hesitation.
But unfortunately, like most of us, I crave love from the places where I don’t get it rather than when it is blatantly in front of my face, an extremely annoying character flaw of mine. Being in hospital and having endless time to think left me staring at my phone and waiting for messages to come through from the strangest of places. It has taken me a long time to realise that quite frankly, some people just don’t care. But in not caring, they are actually doing me a favour by filtering themselves out of my life. It’s definitely a really hard lesson to learn, but when you come out the other side of it, it all makes sense. What’s left behind is the most genuine people you could ask for.
Learning about my body
The amount I’ve learnt over the last three years about the digestive system, the disease and the treatment has blown my mind. It really is incredible what doctors know and what they are able to do with that information. I’m now in a place where I am so comfortable talking about my disease, gruesome details included, to just about anyone. Whether they are comfortable is a whole other question and I realised this at work the other day when I told my colleague that I bleed out of my bum every day. He kindly reminded me that he was eating his breakfast. Ah well, just ‘spreading awareness’.
So this leads me to where I am now, which is just a few weeks away from starting a clinical trial. It might work, it might not work and who knows, it might make me grow a third arm. But, whatever happens, I’m feeling optimistic. I’ve dealt with this before, I’ll deal with it again. If there’s one thing that those of us with IBD have, it is resilience.
This is a guest post by Katie Benham @katiebenhaaaam