The Challenges of Talking About My Ulcerative Colitis

One of my biggest challenges hasn’t been learning how to deal with the gory symptoms of my ulcerative colitis – nor has it been the extreme tiredness I face after a morning of running errands. I’m doing OK with the stomach cramps and joint pain, and I am slowly accepting the ways in which my life has changed since my diagnosis.

Instead, I’m struggling to find the right way to talk about my condition. Half of me is desperate to scream about it from the rooftops, the slightly more considerate part of me realizes that most people have no interest in hearing about the blood I lose when I go to the toilet or the meal that made me think my insides had gone into civil war. Despite that, I know more than anything that talking is one of the best ways of managing, dealing or coping with our circumstances.

So I started small and told my best friend, my immediate family and my boss. Then eventually, I ran out of excuses for everyone else and realized I had to say something when I stopped meeting up with my friends and hadn’t seen my gym buddy for two months. The conversations always went a bit like this:

Me: “Sorry I didn’t make it. I’ve been diagnosed with an inflammatory bowel disease and I’m flaring up pretty bad right now.”
My friend: “Oh, like irritable bowl syndrome? My uncle has that — you should stop eating pizza or something.”

Me: “I have ulcerative colitis.”
My friend: “Ulcers? Like a stomach ulcer? I had one once, but my doctor gave me antibiotics and I was fine so stop worrying.”

Me: “Yeah I’m sorry I couldn’t make it. I was in hospital on that day.”
My friend: “What? You’re still not well? You look totally healthy though – you’re probably much better by now, right?”

The list goes on, and I get it. I had never even heard of ulcerative colitis before my trip to the gastroenterologist, so I definitely don’t expect my friends to understand the ins and outs of my colon. However, I can’t help but feel even more demotivated to talk openly when everyone has an assumption, or preconception.

So what am I proposing? Don’t jump to conclusions. Work hard to find the balance between offering support and suggesting you know it all. Educate yourself – if a friend or family member is going through a diagnosis, understanding the symptoms and triggers will make things easier for everyone.

Listen, too. Listen before you give your thoughts or feelings. In return, I promise I won’t shout the next time someone suggests I cut dairy and gluten from my diet (seriously, don’t even consider telling me to stop eating cupcakes). I promise to take a deep breath and teach you something about my disease. I promise to answer questions – as invasive as you fancy! I also promise to keep talking, even when I feel discouraged and disheartened, because talking to the best way of managing, dealing or coping with our circumstances.

We want to hear your story. Become a Mighty contributor here.