Invisible Illness Frustrations
Last updated: November 2023
Looking OK does not equal feeling OK, and this is one of the most frustrating things when it comes to having an invisible illness such as ulcerative colitis.
Ulcerative colitis is an invisible illness
Anyone that’s had an invisible illness for more than 3 months has probably been told, “You don’t look sick,” at some point. I get it. I mean, what are the most common symptoms we’re dealing with?
Abdominal cramps... Can’t see those, no matter how painful they are!! Fatigue... Can’t see that! We probably can’t even make it out for there to even be a possibility of anyone noticing our tired eyes!
Getting stuck on the toilet – definitely don’t see that!
But it's not always invisible
It seems that the few visible symptoms we DO have, still don’t actually advertise, "Hey, I’m actually really sick right now." Instead, they prompt comments that usually just end up making us feel bad.
If we lose weight, the assumption is usually that we’re dieting. "You’ve lost weight - you look great!" And my personal favourite: "I wouldn’t mind having IBD if it made me lose weight like that." Or better still, they think we're not looking after ourselves..."You should eat something."
If we gain weight, that usually prompts all types of other unwanted comments, such as, "What happened to you?" Or, we get advice about diets and exercise regimes, which of course, we’ve no chance of actually doing BECAUSE WE ARE SICK!! And lots of community members have stories about people thinking or assuming that they’re pregnant because they are so bloated.
If people notice the frequent toilet trips, they are more likely to assume that there’s an eating disorder in play rather than a chronic illness. It’s ridiculous really, to have the very few visible symptoms we have dismissed (or distorted) because we look fine in general.
People don't see UC, so they don't understand UC
Last year, our local lawnmowing man knocked on my door and then declared that I was obviously well enough to mow my own lawn. But I’m actually not capable of mowing the lawn. I haven’t done it for years, because I was in a very long flare which had completely wiped me out, and then the surgery that sorted it out resulted in secondary fibromyalgia! I know, you couldn’t make this stuff up!
It made me really angry, but it’s just one of a million examples of people making assumptions about others based on them looking healthy enough.
But it can be nice that we don't always "look sick"
Sometimes, though, how we feel does show – when we have to show up no matter how terrible we feel. That might mean that the lack of sleep, or not actually being able to stand fully upright are very apparent.
For me, that was for work. Many times I walked in to, "Wow, you look terrible." But that’s not much better than someone thinking I am well, to be fair!
It’s not all bad, though. It’s a double-edged sword. Sometimes not looking sick can actually be a blessing. It gives us the ability to pretend we are OK when we want to. When we don’t want to talk about our health and just want to get on with things, no one is aware of the struggle we’re hiding.
Does living with IBD impact you financially?