The 1st-7th December is Crohn’s and Colitis awareness week and this years theme is making the invisible visible. If you’ve read this blog for a while, you’ll know that I was diagnosed with ulcerative colitis when I was 16/17 and then had my bowel removed after a very bad flare up when I was 18. Every year, I do different styles of blog post to raise a bit more awareness.
Having a chronic illness like inflammatory bowel disease can be a bit weird for many reasons. On the outside, you can look pretty healthy and ‘normal’. In reality you’re dealing with a lot of pain, fatigue and, in the case of IBD, your insides are a bit of a mess. Before having my surgery, most people didn’t even think I was ill. I know for a fact some people thought I was making some of it up or exaggerating.
Even now, when I go for hospital appointments, the nurses always think it’s my dad who’s come for the appointment and not me.
Long story short, people still think young people can’t be ill.
Before my surgery, I rarely talked about the issues I had as side effects and other symptoms of having ulcerative colitis. I suffered with anaemia, bad joints, mouth ulcers, extreme fatigue, depression and anxiety. Most of these were made worse by the amount of medication I was on. Add to that the pain from having an inflamed bowel and having to go to the toilet many times a day.
I still looked like me though. People always struggle to see past that and realise that there’s a lot of pain underneath which you don’t necessarily share.
How can we make the invisible visible?
This year, Crohn’s and Colitis have been at the forefront of campaigns to change disabled toilet signs. It may seem like a small thing but for people who actually need to use disabled toilets, and don’t look like they do, it’s a massive step. Sam Cleasby wrote a fantastic blog post on an experience she had using a disabled toilet which I feel very fortunate to have never experienced.
It’s little things like this which can make a big impact. Things like this which make people who live with chronic illnesses lives just a little bit easier.
It’s important to remember that everybody is fighting their own battle. Chronic illnesses for the most part are invisible. Therefore it’s even more important to raise awareness is these illnesses can be more visible. IBD currently has no cure. Because ulcerative colitis only affects the bowel, my ‘cure’ has been having my bowel removed. However as I still have the last bit of my large bowel, I still feel the effects of ulcerative colitis even though I don’t have the urge to go to the toilet all the time (which I’m very grateful for!).
I still struggle with anaemia because I have a bag which fills with blood on my body (soz if thats tmi). Something I still struggle with joint pains from time to time, partly due to IBD and partly due to the years of steroids I was on. I also still really struggle with fatigue and the dreaded brain fog! However, I look healthy and totally fine because of the invisible nature of IBD.
So there’s my little post for Crohn’s and Colitis awareness week 💜