One of the main stumbling blocks in helping those around us understand the complexities of our illness is lack of education. Many patients themselves are ignorant of their own disease. With this as a starting block how can we be expected to educate anyone else?
I know people who profess to have Crohn’s Disease yet can’t even spell it correctly. C.R.O.H.N.S. I can certainly understand this from those without it; my boss for example spells it in such a myriad of different combinations that it feels like I’m solving a conundrum every time I see my paperwork. Obviously I write about Crohn’s a LOT but I don’t think it’s too presumptuous to assume you should know the name of what you are suffering from for starters. Bad spelling aside, I find myself continually batting away inaccuracies and inane theories about IBD on a daily basis. My local doctor’s surgery is pretty lacking in knowledge when it comes to Crohn’s for example. In the past few years I think I can safely say I’ve taught them more than they’ve taught me about IBD. This in itself is a bit of an embarrassing disappointment. Theories on the effects of IBD seem to vary from ‘OHMYGODYOURGOINGTODIE’ to ‘it’s just like IBS’ – neither of these being in any way accurate. In fact they are both deeply unhelpful for both patients and those around you. My office at work for example is a hive of hypochondria. Most days someone will have a stomach ache/period pain/IBS/eaten a dodgy curry and ‘know how I feel’. This infuriates me so much that depending on my mood on any given day I usually either smile politely through gritted teeth or straight up blank them. These comments only serve to remind me that people seem utterly reluctant to see past the outer shell and take on board that I have a serious illness. They gleefully fire their own suggestions at me if I look a little peaky – ‘eat more’/eat less/have a lie down/work less/take a holiday/go to the toilet’ ETC. I am aware they are perhaps just trying to be helpful, but it’s really only supportive If any of these suggestions have ever proven to work.
The idea of just going to the bathroom to sort myself out is an exasperating one. As if the toilet is some sort of magical pot of gold on which I’ll expel the tears of a unicorn and a leprechaun will hand me a piece of silk loo roll and all my woes will evaporate. (Although that would obviously be AWESOME).
Crohn’s patients do not go to the toilet 4505781 times a day. We don’t have diarrhoea 5754157854 a day and we don’t feel better if we just ‘eat the right things’. People with ‘upset stomachs’ do not know what it’s like to have Crohn’s Disease because WE HAVE AN INCURABLE ILLNESS not a bout of diarrhoea that will pass in 24hrs.
As we are a few days away from a new year I’d like to make my resolution to educate rather than continue to allow myself to become infuriated with inane comments. If someone makes a poorly judged joke at the expense of my condition I’ll calmly kill the mood stone dead and explain that it’s actually utter bullshit. Facts before funnies. I understand that this will undoubtedly lead to the party invites drying up but that OK. I spend most of the time at any party in the toilet anyway…
