Since August 2005, I’ve had a little friend that goes
everywhere with me.
Even writing that statement makes me feel a bit mental. And
you probably think I am too. But, please, stick with me on this one.
So this friend. I call him my Crohn’s Gremlin. I haven’t gone as far as giving him a real name, because that would absolutely
be taking this too far, but I have him. And every time I go to do something, whether
it’s book a three-month-long trip to the USA or grab a particularly spicy curry
from the supermarket refrigeration aisle, he’s in my ear hissing, ‘Are you sure
you should do that?’
Sometimes, I listen to him. The curry always gets put back.
The three-month-long trip to the States, however, went ahead. Twice. 75% of the
time, I’d say my gremlin doesn’t know what he’s talking about. The other 25%?
He’s totally spot on.
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| Oh hey! Did you have plans today? |
And there’s the thing. It’s not just a bit of tummy trouble.
It’s everything. It’s getting woken up in the middle of the night with a
searing stomach pain and constant urge to go.
It’s juggling your studies, your work, your social life with regular medication
to get it all done. It’s lying in a ball on the bathroom floor when you’ve
eaten something you shouldn’t have (a day when the gremlin just wasn’t loud
enough). It’s hours on the toilet. It’s vomiting as soon as you eat mid-flare. It’s
the worst pain you can imagine – worse than IBS like your pal’s Auntie Kath
has, and 100 times worse than a dodgy kebab. It’s pain so violent you can
hardly breathe – literally, your breath catches in your throat, morphs into a
panic attack and you genuinely believe for a moment that you might die. It’s
not having any clothes that fit because you keep on losing weight, and you
really don’t want to. It’s cancelling plans and becoming the flaky friend but
you just don’t have the energy. It’s being anxious about even going out in case
‘things go wrong’. And, God – it’s embarrassing. “Hi, I’m 18 years old and I
have a bowel condition.”
Because that was me. 18 years old, standing on the edge of
the rest of my life, with uni and hot uni boys and uni nights out and more hot
uni boys (and an exciting media career once I’d got all of that out of my
system) stretching out in front of me. Then it was all pulled away from under my
feet when I was told that all of that? The pain and the cancelled plans and all
that quality time on the loo? That’s Crohn’s disease. And you’ve got it
forever.
Being in hospital, hooked up to drips of steroids and
antibiotics and regular morphine injections while your mates are in the pub, is
not really the dream, let’s face it. It’s probably as far away from the dream
as it gets. For me, in that hospital room, surrounded by grapes and cards and
soft toys (does anyone else have an abundance of soft toys from hospital
stays?), I thought life was over. I hung up any hope of going to uni or having
a social life, I gave up on the notion of being a journalist, of falling in
love, of having babies, of being normal.
And I accepted the fact that I was going to be the Girl with the Knackered
Bowel forevermore.
It’s dark, having a bowel condition. And people will roll
their eyes and tut at that, because, God,
how melodramatic can you get? But it is. It’s lonely. Accepting that things are
going to be different from now on is really, really tough, especially when
you’re young. It’s accepting that you’re not going to be like your mates all
the time. It’s accepting that you’ll spend a lot of time in your bathroom – to
the point that you’re familiar with the pattern on each tile at eye level and
you’re considering getting a magazine rack for beside the loo.
It’s accepting
that you’ll spend a lot of time at your doctor’s and in the local pharmacy. It’s
accepting that you might have to research the menu before you go out for dinner,
or scout out where the loos are whenever you go somewhere new. It’s accepting
that, when dating, there will come a point when you have to explain that you
have a really attractive bowel problem. It’s accepting a new you.
After a few months of more drugs than I even knew existed,
actually starting uni, battling with people not understanding IBD at uni,
missing lectures because of flare ups, dropping out of uni, dealing with crippling
anxiety, very dark days, a bowel resection and having a Good Long Look at
myself, I decided – d’you know what? I don’t want to be the Girl With the
Knackered Bowel. I just want to be me.
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| "A scar does not form on the dying. A scar means, I survived" Chris Cleave |
And my health started to improve. The resection worked, the
drugs started to kick in and, very quietly, I was ready to give it all another
go. So I went back to uni, I got a degree, bagged a problem page in a Scottish
national newspaper, spent two summers working at a summer camp in New York, did
loads of work experience, worked weekends in retail, went on drunken holidays
with my friends and, just after finishing up a journalism postgrad at
university, I got offered a job with a small magazine publishers based in
Glasgow. I now work full-time as the assistant editor for a range of free
magazines, including disability title Enable and student magazine Source. I am
busy all the time and absolutely thrilled to say I am a proper journalist –
I’ve got to do some incredible things over the last couple of years.
Sure, there are bad days when I’m knocking back painkillers
at my desk, going for investigative colonoscopies, woken in the middle of the
night by the pain, strolling around the house with a hot water bottle clutched
to my stomach and having constant battles with my gremlin, but overall? I’m
good. My Crohn’s is – she says, touching every bit of wood in sight – under
control. My life is under control. And there was a time when I, the Girl With
the Knackered Bowel, thought I’d never get to be here.
And I think you should too.
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