Tuesday, 22 December 2015

Bowel at the Moon

[Names have been changed to protect the identities of (potential) murder victims] 

Dear Sir/Madam, 

Actually, scrap that, let’s go with To Whom This May Concern.
I’ve always hated 'Madam' if I’m honest. When people refer to me as Madam it makes me feel like I'm 80 years old. Or an owner of a brothel. It's just a personal dislike. It doesn't make me want to slaughter the person who says it; lots of other women/brothel owners love it I'm sure. But as I do dislike it, I'll inform whoever says it of that fact so and we both move on. Easy as that. 

Explaining you have a bowel disease; apparently not so easy to move on from. 

The reason I’m writing to you today is because it’s become apparent that you just don't ‘get it'.
By ‘it’ I of course mean my chronic illness. You say you get it. Sometimes your actions even show me that you understand.

But you don’t.

If you did, you wouldn’t question me. You wouldn’t make me feel small for something out of my control. Something that already makes me feel weak and worthless a lot of the time.

Me, I regularly profess I don't want, and never have wanted, any special treatment for my condition. But, (and it’s a big but here); I would VERY much appreciate some allowances - if you're unsure what I mean by that then perhaps consider the same allowances you would afford a man/woman in a wheelchair for example. You would undoubtedly appreciate they'll more than likely need to use a lift, or an accessible toilet, and you’ll therefore allow them unfettered use of said facilities. You wouldn't question why said wheelchair-user may take a little longer than your average Joe/Joanne to use these facilities, because well you can SEE that they are disabled! It's obvious! Plus it would open yourself up to a nasty lawsuit/grievance/public humiliation, and you wouldn’t want that.

You might even be accused of being ‘disablist’. Imagine it – You, versus a man/woman in a wheelchair. You’d be publicly shunned for your disgusting prejudices. You’d be vilified by your co-workers. You’d feel powerless and helpless to explain how you truly feel despite initial appearances.

Which brings us neatly back round to the point of this letter.

I’ve suffered from Crohn’s Disease now for over 6 years. It’s been established I’ve probably had the condition since I was very young, it only came to the fore when my symptoms became unmanageable. The reason I mention this is that I’ve felt my body was ‘wrong’ before I really knew how it should perform. I’ve felt I’ve had to justify why I feel certain ways for as long as I can remember, before I knew why myself. So when I finally did establish what was eating me up from the inside out, it was a relief. A massive mystery solved and confirmation I wasn’t imagining it – I was different. I AM different.

You haven’t had that same time to get used to the idea. That’s fine, I understand that and I of course make allowances for that. I try to keep you informed of my condition and ensure I follow the rules of a sick person to a tee. I don’t ask for anything more than a little understanding. I don’t expect you to suddenly gain a PHD in bowel disease – I haven’t.
But I do ask that you listen, and try not to judge based on your own experiences, or worse, on looks alone. Doing these simple things is truly one of the biggest compliment you can pay us.  

So when faced with someone, like me, with an invisible disability, please try to remember that we are struggling. I am not exaggerating when I say that every day is a struggle. It’s incredibly hurtful to feel demonised through no fault of your own.  Because you can’t see me rolling up in a wheelchair or bandaged up like a mummy, doesn’t mean I am ‘well’. Especially when I have repeatedly told you so.

Because you can’t see my illness, doesn’t mean it isn’t there. It’s with me every day of my life. You only have access to a tiny snippet of that life, please don’t make it any harder than it has to be.

Yours in love and kittens,

Kath xox

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