One of the most infuriating aspects in living with chronic illness is the seemingly constant feeling of having to explain yourself. Although people on the outside know that you aren’t, and won’t be getting any better, it doesn’t seem to stop their consistent confusion when things don’t improve.I often feel that I’m making excuses for myself. I tell white lies that I’m feeling better than perhaps I am because it’s usually 99.9% easier than enduring confused and questioning glances when you have to explain that you are still ill.
The truth is no one wants to know you are still poorly; the people around you want to see you well and on the mend. The problem with that is in living with an incurable or ongoing illness there rarely is a point of ‘on the mend’. That isn’t meant to sound depressing; it’s just a fact of diseased life. It’s hard to express to someone who doesn’t live with a chronic condition just how relentless it can be. Even when you feel ‘well’ it’s still there.
I’m in the middle of a particularly nasty flare-up. I’ve been on medication and in and out of hospital for various procedures to get my symptoms under control. (Note: ‘under control’ not ‘better’). All to no avail so far, mores the pity. The medication I’m on has some nasty side effects; night sweats, insomnia, shakes, nausea, mood swings, headaches, bloating, pain, and dizziness, amongst others. It’s beyond irritating when the drugs designed to help you, end up loading on a whole other world of worries to think about. This makes for often painful and tedious conversations. Why are you looking worse when you are meant to be getting better? I thought you were on medication? But you weren’t sick the other day?
It’s annoyingly tiring when you are sick and fed up with the simple fact of being sick, to have to explain to someone that things haven’t changed. Most people get sick then better. We don’t. We get mildly less sick. Maybe for half an hour or so then back to uber-sick again. We still have to live, and work, and do the dishes and every other chore and activity that ‘normal’ people do, alongside trying to maintain upright long enough before passing out. It’s tiring enough in itself living with Crohn’s Disease without having to relay the whole sorry tale over and over again.
I don’t talk about my condition every minute of every day because I’m already thinking about it every minute of every day. It’s on my mind all the time because I feel it ALL THE TIME. When I talk to the world outside my colon I just want to be ME. Not sick. I’m not an idiot of course – I’ll speak up if I need help, but I don’t think it’s in any way constructive to spend the majority of your time outside your own head discussing the finer details of your bowel movements.When people question your condition and all its various ‘eccentricities’ it’s annoying and frustrating in equal measures. It’s sometimes for the best however, (for everyone concerned), just to grin and bear it. The alternative is prison time, and I’ve heard the food and activities in there are far from bowel-friendly.