Jiving on Regardless

{May 21, 2009}   Looks can be deceiving

Here is a piece I wrote for my local NACC Group Newsletter – thought it might ring some bells.  Ali inspired me to write it as any of her readers know she is often confronted by issues on the tube to work – cheers Ali x

Throughout the ten years I have suffered with Ulcerative Colitis I have often been confronted by minor prejudice and ignorance. Most of this stems from the fact I have never really looked ill. In appearance I am a young woman with two healthy children and I have no external signs of illness. I have no damaged limbs, I have all of my hair, I don’t walk with a limp or use a wheelchair. My illness is, to all intents and purposes, invisible.

In my experience our society appears to largely understand illness and disability through the way a person looks. I quickly came to realise this and over the years have made many concessions to this understanding. On occasion I have chosen not to put make up on as then I would look ‘too well’ and my ailments might not be taken seriously. I have chosen not to wear a certain outfit as then I would look too smart and again my ailments may possibly not be believed. If I turn up to work looking smart and well put together with no signs of illness how can I justify having had three weeks off because I couldn’t leave the bathroom? If I turn up to the school gates with make-up on and looking well groomed how can I justify the fact that this is the third week I have cancelled a coffee date with my circle of friends? I find that the better I look the less understanding people are of the true rigours of living with Ulcerative Colitis.

The problem with the assumptions people make about illness is that in order to conform to them I must stop myself from being the person I want to be. I can’t control my UC. Every single day is hard during a colitis flare, every day is riddled with pain and discomfort and the threat of embarrassing incontinence. The one thing I can have some influence over is the way I look. I want to look well and ‘normal’ but people’s assumptions prevent me from doing so as if I do I shall then be faced with questions and harsh judgement in the form of funny looks, tuts and snide comments related to the fact that I ‘don’t look ill’ so ‘is it really that bad?’.

There have been many memorable occasions when my using disabled toilets has been met by tuts and shakes of the head or my using a disabled parking space with my blue badge (used because of associate inflammatory arthritis) has been met by derogatory comments or worse, questions as to why I am using that space. I am not the only one to have sat on the tube or a bus and not given my seat up for the old man or pregnant lady only to be met with accusing attitudes, how could I, when I look so ‘normal’ need that seat? I am not ignorant or rude – far from it. On these occasions I have desperately needed to use that toilet or needed to park in that bay so that I can get to a place (usually a toilet!) quicker. I have needed that seat as standing up would result in me keeling over as I am exhausted from my UC and associated anaemia. I don’t use these facilities because I want to I use them because I have to. I may not look ill but unfortunately I am ill.

I have learnt that illness doesn’t necessarily have a ‘look’ about it. Often times people look well but can be in serious pain and need help. Often that person who looks healthy sitting on the tube is actually in serious need of the seat they are sat in. Sometimes that handsome young man who looks fit and healthy has actually just spent two hours on the toilet in agony. Sometimes that mother of two young children isn’t just shattered from the rigours of being a Mum but is exhausted from being a Mum and managing a chronic and debilitating illness.

Having now had J-Pouch surgery I am fortunate to no longer suffer from UC and to finally be fit and well. As time goes on I realise that UC has opened my eyes. If I ever was then I am now far less judgemental of people and their appearances. I now fully understand those expressions we so frequently here such as “Looks can be deceiving’ and ‘Never judge a book by it’s cover’. They are true and well worth remembering as we go about our daily lives with or without IBD.


Rich says:

That, Lottie, is spot on.

I had a similar experience on the train. I get associated arthritis, had been away from home, had massive flare-up, feet/ankles were swollen and EXTREMELY painful, could barely walk. I was rounded on by a women for not giving up my seat for a nearby old lady – i couldn’t get a word in. In the end she only backed off when i rolled up my trousers and showed her my feet! I was nearly in tears: a man in his thirties.

Incidently, the old lady was lovely, she didn’t even want the seat, she had nothing to do with the other woman.


Ali says:

Charlotte – this is soooooo good, you have a knack for explaining things so well.

Ali xx

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