Saturday, 30 July 2011

Crohn of Contention

There are many stigma's attached to Crohn's Disease. The majority of which i've already been unfortunate enough to encounter in my short Crohn's career. It's understandable in most cases as not much is widely known about the disease - out-with the immediate Crohn's 'community' at least.
In my case the only knowledge I had of the disease was from someone who had suffered for years with it, and was now completely blind, and almost crippled, having horrendous stomach issues. Of course this particular case being in the forefront of my mind when Crohn's was first mentioned during my diagnosis filled me with terror and dread. The thought of going from a relatively healthy young woman to essentially a cripple devastated me. I quizzed doctors and nurses relentlessly for more information until I was happy (ish) that these symptoms and side effects were extremely advanced (and relatively rare) and went side by side with other health issues that I was lucky enough not to have.
So as I know how little is known of the disease and the various stigma's surrounding any form of bowel disease - mild or severe - I try as best I can to make allowances for peoples attitudes towards it. However hurtful or just straight up ignorant they may be.
The main issue with Crohn's is that it is seen (or not as the case may be..) as an 'invisible illness'. For most sufferers there are little to no, outward signs anything is wrong. In the initial stages or during flare-ups, weight loss is the main factor, and, depending on your size prior to this, this may be noticeable or easy to conceal. In my case I dropped 2 dress sizes and 4 bra sizes. Devastation all round ;)
It was hard to keep up, I had to constantly buy new clothes and undies for fear of some part of my anatomy making an unexpected appearance due to the gapes in my clothing. Particularly annoying as I was asked to be a friends bridesmaid that August, which meant several alterations to my dress were required, and when her big day arrived a few extra tugs of my corset were still necessary to avoid giving the vicar an eyeful.
People with Crohn's (generally) don't require wheelchairs or walking sticks and even during a particularly bad flare-up, don't look as what most people would consider to be 'ill'. I've actually been told how well I am looking when i've been feeling utterly awful! Maybe it's Maybelline?
Another common misconception about Crohn's is that it may be contagious and can be 'caught'. This is a bit of a gripe of mine - I find it a bit offensive for someone to ask this (in my presence at least) as it somehow implies that I would be reckless and selfish enough to expose my illness to others without a care. I think a few people may have thought twice about visiting me in hospital for this particular reason. Nice. (For the record there is no evidence whatsoever Crohn's is contagious).
And finally, while i'm on a roll - another Crohn's related gripe are assumptions. People assuming I can't do certain things now as I used to. It's true, I have to take things a bit easier now but i'm still the same woman - just a bit more 'diseased'. I am KATHLEEN. HEAR ME ROAR. And all that jazz. I've learned to say no to the things I know I can't handle (or don't want to - there have to be some perks!) I understand people are concerned for my welfare but I still have my voice and I'm not afraid to use it. That or my slapping hand if need be..


  1. I HATE when people think that Crohn's is contagious. One time there was thins particularly bitchy girl at school that refused to use that bathroom after me because she said she didn't want to get Crohn's. I don't like to admit this much but it actually kinda hurt my feelings.

  2. The only contagious thing about u is ur smile and ur warmth! U know I have haters too! So fuck them!! Love u xx

  3. That's awful Tim. The ignorance of people can be staggering! No wonder she hurt your feelings, you can be safe in the knowledge although you have Crohn's you were blessed with a brain - something she clearly lacks!

    Sarah my darling moo-face! Ditto :) xx

  4. Other gripes: When I'm at work not feeling well, "oh someone had too much fun last night." or If I am running to the bathroom a lot "She must be pregnant or has her period." Why is it when girls aren't feeling well it's either they are hung over or having their period?!? Ugh! Why can't I just be sick??
    Another gripe, some people think you can control it or you are making it up. It all just boils down to ignorant people.

  5. I get those a lot too Julz - most people I work with know what's up but as my desk is pretty far from the bathroom I have to do the 'walk (or sometimes run) of shame' past lots of judgemental faces!
    You are so right - some people just won't take the time to try and understand!