Monday, 5 May 2014

What I Learnt From Applying to be on Embarrassing Bodies

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I was just happily sitting in a coffee shop in town last week, and with absolutely no warning at all it felt like someone was repeatedly stabbing me in the tummy, back and sides. All I wanted to do was curl into a ball and cry - for the first time in 5 years I'm actually having regular pain free days, but it means when interstitial cystitis flare ups do occur, especially as quickly as that, it's just so much harder to deal with.

I'm lucky I was carrying my little bag of pain killers with me otherwise I don't know what I would have done. While I was waiting for them to kick in so I could try and move, I happened to notice the Embarrassing Bodies truck was right outside. I posted on Facebook jokingly saying I wish I had no shame so I could go sign up to be on it and get free private healthcare that'd fix everything (every chronic illness sufferer's dream). To my surprise, everyone told me to go for it. Then I started thinking what do I have to lose? A few years ago I never mentioned my IC, but after writing a blog post about it 2 years ago I've been a lot more public and vocal about it and all the symptoms and fun little problems that come with it - even if there are some things I still don't mention.

So I applied.

I was shaking so much explaining what IC is and what kind of daily symptoms I have as well as those during a flare up, and how I really need help with pain management and urgency issues - having to go to the toilet 30 times a day and getting about 2 minutes warning on a good day might be something I joke about, but I think if I didn't I'd just cry. I also think this might be linked with bad anxiety issues I've been having lately. They told me the thing they'd like to focus on most would be the symptoms I don't talk about often, like how I'm struggling with finding a form of contraception that doesn't make my pain worse and how sex also makes it worse. Not things I even feel comfortable mentioning now, never mind on national tv! But I reluctantly agreed, knowing at least it'd still be raising the profile of an illness most people have never heard of. Even if it didn't help me, there's a chance someone that's been told they have bladder/kidney infections that don't show up on tests and given antibiotics and told to drink cranberry juice (both of which make IC a hell of a lot worse) might be watching, and realise there's a chance they've been misdiagnosed like I was for most of my life.

I waited for a phone call that night and when it didn't come I assumed I hadn't been chosen, and was surprised that I was disappointed. While it had been a very spur of the moment decision, it was actually a huge step for me. Being more open about my condition is one thing, but being prepared to talk about it on television is just a whole other ball game. Even feeling confident enough to discuss something so personal with strangers while signing up was something completely new for me, and something that I'm really proud of myself for doing.

A few days later I'd mostly put it out of my mind, then I received a phone call. They felt my case wasn't strong enough to feature on the main show (the phrasing was a little kick in the teeth of IC sufferers that get chronic pain, but nevermind!), but that they sympathised with my problems and wanted to help in any way they could, so they offered me the chance to have a Skype conversation with one of their in-house GPs instead. This would take place tomorrow, and I have to confirm today.

I haven't seen the show in years, but from what friends tell me this means my picture would be in the background and the conversation would be private, and again I was surprised that this disappointed me. I thought I'd signed up to try and get help with dealing with my IC, but I think what I hadn't realised was that I also wanted to help raise the profile of the illness for IC sufferers everywhere. So when we have to explain our condition, people don't just assume it's cystitis or a made up condition. And in all honesty, I don't see a short conversation with a GP helping any more than my new specialist does (who has actually been fantastic this past year).

I've said yes and I'm now waiting to hear back from them, but even if I don't go on what I've taken from even just applying is more significant than what I'd probably learn from being on it. I might not be my illness, but after a very long time of being embarrassed about talking about it, I'm also not ashamed of my illness anymore neither.

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