Frustrations of an Invisible Illness

Editor's note: Between the pain, symptoms, flares, and other daily challenges, life with inflammatory bowel disease (IBD) is hard. We want to shed light on these challenges during Crohn’s and Colitis Awareness Week (December 1-7, 2019). Crohn’s and colitis are often invisible illnesses, and therefore not always understood by others. We asked our advocates a series of questions to raise awareness about many of these invisible aspects of the condition. Here’s what they had to say!

Intense pain and chronic fatigue

Living with ulcerative colitis is a complicated business. There are obviously many issues we face daily, from intense pain and chronic fatigue, to constant toilet trips and debating what you can eat today. All of those things are unpleasant, but one of the things I actually find the most difficult is the constant fear. The fear that things may get worse at any time. Even when in remission, I would constantly find myself saying no to any plans that weren’t immediate, because “I might be in a flare again by then”.

I had pretty brief periods of remission, and flares always seemed to come at me very quickly. My first ever flare, I went from well to sick in a matter of days and had emergency surgery 3 weeks after that. That kind of rapid downhill spiral is the norm for me, so I lived in a constant state of trepidation; like walking a tightrope, but not actually being very good at it.

This mindset meant I was always living like the sick version of me, regardless of whether I was well or not at the time.

A flare brings even worse fatigue

Fatigue. There’s pain relief for the pain. Options to manage the constant toilet trips – working from home / bulking meds, change in diet. A multitude of sore bottom relief options. Joint inflammation, rest. But the fatigue, it’s always just something I cannot fight. It would bring me to physical and mental full STOP. I have tried no end of remedies, both advised by the GP and the alternative therapy route.

Extra-intestinal manifestations of UC

Symptoms are not confined to the intestine. Five years ago, I didn’t really see IBD being talked about in the media, and while I do think there has been improvement (although I can’t be sure as I am much more active in the community now than I was then), IBD is still mainly portrayed as a “bathroom disease”. Urgency, abdominal cramps and often resulting surgery are common phrases, but that doesn’t even really begin to tell the story of life with inflammatory bowel disease. All of the extra-intestinal manifestations and the psychological impact don’t really get touched on!

Living with an invisible illness

“You look OK, so you can’t be that sick.”

It’s incredibly frustrating to have an invisible illness. People often struggle to comprehend that intense pain and discomfort can be hidden so easily. I remember back in 2015, I needed emergency surgery to sort an abscess and twisted intestine, as my small intestine struggled to let anything other than liquid through it. I’d been very open about the amount of pain, but still, my mum's partner said “I didn’t realize she was THAT sick”, despite having been around since my initial diagnosis and first 4 surgeries - I must carry “sick” very well!

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