My brother, Matthew, has symptoms that remind me of what it’s like to live with inflammatory bowel disease. I wanted to tell you about his struggles with invisible illness because for some of us, there is no explanation.
Having an invisible illness or disability means that strangers have no idea until you tell them, and they usually have little sympathy unless you explain how much you suffer.
Even then, human beings generally respond better to visible issues when it comes to the health of others, broken bones or covered in pox = you are sick. You’re bipolar or you’ve had to have part of your bowel removed = well you don’t “look sick”. The ignorance can be worse if your illness doesn’t have a name yet or is a lesser known one, and people will suggest you try something like yoga to help.
How many times have you heard, “Oh yeah I get IBS too when I’m stressed” which is just as frustrating as if you are a sufferer of migraines and people say, “I get headaches if I stare at my computer screen for too long”. It’s not that our family, friends and colleague aren’t well meaning, they just don’t get it.
My brother has symptoms that sound like an undiagnosed case of IBD to me.
He struggles with stomach cramps, diarrhoea, mucus, exhaustion and weight loss if he doesn’t avoid beef, garlic, fizzy drinks, too much dairy, too much veg or alcoholic drinks made from hops and wheat and so on. But he remains polite when greeted with misplaced advice, it’s very likely that if you say to him have you tried cutting out ‘so and so’ you’ll get a much more positive response than you would’ve had from me when I was suffering with ulcerative colitis. “Have you tried cutting out gluten?” people ask. “No, because literally until this morning it wasn’t a problem and by Wednesday it won’t be either,” I’d reply, with expletives!
Before every meal Matthew drinks a sachet of Colestyramine (he was taking Questran, but the pandemic has led to supply shortage). This medication allows him to eat but only reduces his symptoms.
Eating out is particularly stressful for him, he’ll ask for the allergens menu, but more often than not it won’t list everything he needs to avoid.
He’ll ask, but they don’t always take him seriously because his triggers aren’t common like nuts or shell-fish. He’s lucky that he ‘only’ gets diarrhoea and not anaphylaxis.
Even our mum often forgets, because his problems are ‘invisible’, and she’ll serve up something in the Sunday Roast that can put him out of action for a couple of days. It could be something as simple as not checking the ingredients in the gravy.
Matthew's intolerances are mounting, and his pool of foods to choose from is growing smaller.
He does however keep smiling, he keeps finding new foods to eat and he keeps reminding people all around him that just because you can’t see something, and just because it’s not yet diagnosed, it doesn’t mean it’s any less serious an illness than one with more visible symptoms. Difficult as it is for my brother, it doesn’t stop him being a poser, as you can see from his picture!
My advice to him and anyone else struggling with symptoms like his, is to contact your GP as soon as possible so your symptoms can be investigated. You could be living with an undiagnosed illness that needs to be monitored or treated, and with inflammatory bowel disease, time is of the essence.
“If you suspect you have IBD, speak to your doctor as soon as possible.” - @sonikmummy