What is a time of joy for many women was my darkest hour.
As I am writing this, I have my laptop balanced precariously on my chest and my legs are sticking into the air, above my head.
Wahey! you may think. Typing whilst shagging! How romantic! But no. I am wearing my ankles as earrings because my cankles have swollen up to the point I can’t wear shoes, and I’m desperately trying to deflate them.
YAY! Water retention!
I’m double dropping Rennies like there’s no tomorrow, because heartburn is driving me INSANE. I had to bypass dinner again last night, and have handfuls of popcorn instead (If I’m honest I don’t actually mind this. I like popcorn, and it must have some nutritional value in it somewhere? No?).
I’m basically living the life of a heavily pregnant woman, without the whole growing a human thing, and it’s all because of medication which is actually making me better. I’m pretty fed up.
The irritating thing is that if I stop taking the steroids that are driving me so insane, I’ll probably end up in hospital again -- so it’s a lesser of two evils. I hate remembering that I’m ill, but looking at my Joe Merrick style trotters and burping up FLAMES (not quite flames but I’m allowed to be hyperbolic, I’m ill, man) is a constant reminder that at the moment all is not well within my innards.
Before this just turns into a total whinefest and I whip out the World’s tiniest violin, I need to check myself. I am not dying, I live a normal life, I’m able to do most things (drink and drugs are not on the menu at the moment but that’s probably for the best anyway). I can work, if I actually ever bothered to get my license I would be able to drive, I can socialise.
I had been in remission from my illness for about six months before I started flaring up again, and when I’m well I can do whatever the fuck I want. Life isn’t bad, don’t get me wrong. I just have an embarrassing illness.
I have "juicy veins," apparently.
I have Crohn’s Disease, an IBD. That basically means that when it’s bad, I can’t eat or drink anything without it a) making me hurt and b) making me go to the toilet (GLAM!).
A lot of people don’t know much about it, and are only exposed to it by means of TV shows like the one in the UK -- "Embarrassing Bodies." The whole premise of the show is that members of the general public who are too "shy" and "embarrassed" to go and see a doctor about their medical complaint, instead whip their vaginal prolapses/herpes/haemorrhoids/unidentified warts out for the whole nation to see – at dinner time. I only hope that they get paid handsomely for it.
Worried your labia hang down too far? Go on TV and show the nation! Been on a shagging holiday to Ibiza and now you you’re peeing blood? Get your Johnson out and Dr Christian Jessen will have a look. Oh, and all these cameras will too!
It’s oversharing to the max, and naturally I love it. I love it until every now and again, it all gets too close to home and someone will hop on the reclining bed and start describing my symptoms, and it totally kills my buzz, man. I want PILES! Extreme dandruff! Not my disease!
Life with an "Embarrassing Illness" means you have to learn to love to overshare, fast. When you are dropping pounds at an epic rate, people will constantly tell you how GREAT it is that you’ve lost weight. WOW! You look so HEALTHY! How did you do it?
The first few times, you might respond that you’ve been exercising. But then that just feels douchey -- why lie? So after a while the standard answer is “basically everything I eat goes through me” which then becomes “Ever taken Dulcolax?” People really don’t like that. But after a while it’s just easier not to lie. Karma points!
Laughing about your own disease is one thing, but when other people make fun of it, it stings. Recently I’d posted something on Facebook and a friend had publicly referred to Crohn’s as "some old man’s disease" in ignorance. I’m quite thick skinned, and I do talk about my illness (such as here) but a lot of people don’t. It’s comments like these that keep sufferers thinking that they can’t mention it, that people will laugh, that it is something to be ashamed of.
I got a message from a girl I know through friends who said she hadn’t told anyone she had the illness as she was too embarrassed, she didn’t want to have to explain all the symptoms and that her employers were getting angry with her for having time off. This broke my heart.
The other common issue (if you can call it that) is that I don’t often actually look unwell. Yeah, my intestines are covered in ulcers, but hey -- my hair’s just been highlighted and I’ve got NARS Schiap on.
“You don’t look ill,” ex colleagues have said, with cynical arched eyebrows.
I actually came back to work once at an old office and I was handed a disciplinary letter, for having too much time off. I’d just spent New Year in hospital. Great management, yo!
Do people expect you to be crawling on the floor, crying? Living with an illness that won’t ever go away means you learn to deal with it, and a lot of the time you shut up about it. No one wants to be bored with every single minutiae and symptom. That’s for when we’re old and decrepit with nothing else to do! I’m going to go to TOWN on it then.
Gross on the inside -– fine on the outside!
Being able to talk openly about health issues means you often worry about being seen as annoying. I don’t want anyone to think I’m a massive moaner, I’m not! I’m just a little fed up right now.
Soon this will all be just another blip on the radar, an insignificant time in what is a very happy life. Soon I’ll be better again, my feet will stop looking like boiled hams and I’ll be able to have a glass of wine again. Cheers to that.
Natalie’s giving a blow by blow account of the state of her feet over on Twitter, lucky you! @Natalie_KateM