Original article written by Sam Cleasby
1. You don’t look sick This is a biggie, IBD like many other chronic illnesses is sometimes referred to as an ‘invisible illness’ because on the outside you can look OK. People don’t realize that it may have taken every bit of effort to get showered and dressed. That I may have painted on a smile just to get through the day and may be dealing with pain, bleeding, multiple toilet visits, fatigue and just feeling terrible.
2. You have gained weight! Yes, I probably have. Because I’m taking steroids that make me gain weight quickly and screw up my body. If you are interested the drugs are also making me have insomnia and I’m growing a beard. You wouldn’t mention anyone else’s weight, so please don’t think you can talk about mine because I am sick.
3. You have lost so much weight! You look great. Just don’t talk about weight at all… People with IBD can have huge weight fluctuation, if someone has lost a lot of weight it may because they have such horrific diarrhea that they can’t absorb any nutrients. The weight loss may make them feel weak and terrible, just because society says that thin means beautiful doesn’t make it so.
4. I know what you are going through When people with IBD tell someone about their condition, they often hear all about that person’s digestive problems, it’s probably better to keep details of your diarrhea or irritable bowel syndrome to yourself. Unless you have the same condition, it is very difficult to actually understand what it like. You can sympathetic but unless you are in the same faces filled boat, you can’t sympathetic.
5. ‘You should eat meat/dairy/no dairy/only vegetables/no vegetables’ Please do not feel you have the right to comment on my diet. I have an auto immune disease that causes my illness, though diet can have some affect on symptoms, IBD is not caused by eating junk food and I can’t be cured by going vegan.
6. My aunt’s neighbour’s brother-in-law cured his IBD by… No. No he didn’t. Because there is no cure. If there was a cure then I wouldn’t have had my entire colon removed would I…
7. Can you hold it? I can’t. If I tell you I need to go to the toilet, then it is likely I have to go straight away. Being in a situation where you have an accident is mortifying, upsetting and humiliating. If I could hold it then I would, and I do try my best so please be sympathetic and try to understand if I run off mid sentence or if you have to wait around for me because I am a long time in the bathroom.
8. Why are you so tired? You don’t do anything. Fatigue can play a huge role in IBD. Either because I have been up five or six times through the night on the toilet or because of medication I am on, or because I am losing a lot of blood or sometimes for a reason I do not know. Sometimes I have a tiredness so deep in my bones that I feel 100 years old, I am so exhausted that I can’t keep my eyes open and I could cry. A side effect of the fatigue is massive guilt, I feel terrible that I am so tired and that I can’t be ‘normal’ – your comments just make that guilt worse.
9. If you exercised more/relaxed/were more positive/took vitamins/did yoga you would feel better You may be only trying to help, but offering ideas for how I can feel better can feel patronize and annoying. I would try anything to feel better and I have probably thought of all those things.
10. You seemed OK when I saw you out last week Despite my illness I still want to try and lead as normal a life as possible. So yes, sometimes I go out and get drunk, sometimes I go on holiday, sometimes I go walking in the countryside. It is often really, really hard to do these things and I have to paint a big smile on my face and do it even when it is tough. That photo of me smiling on the beach doesn’t tell the story of how exhausted I am because I barely slept the night before, that I cried that morning because I was in pain or that I had an accident an hour before.
Please don’t judge me or think I am faking anything. Life is tough and if I can get just a little bit of time where I pretend to be the same as everyone else, then I am going to take it.