Happy World IBD Day – Ignore the ignorant and mean and keep fighting for awareness

It’s hard to say this, but for years I wanted to die.

You probably wouldn’t have noticed as I was a determined little sod. I kept my tears (mostly) behind the toilet door and slapped a slightly grumpy smile on my face as I threw myself into work like I was bashing out my frustrations on a career and homework punch bag.

Secretly I was begging for the pain – which left me doubled over writhing and crawling up toilet walls –  to end, and I simply didn’t care how.

10885393_10152528109831674_4836374620243785554_n

Happy and (fairly) healthy these days

I was desperate, fatigued, living in chronic pain, battered bruised and exhausted. I never considered suicide but when the pain had me screaming I would simply want it all to be over.

As a teenager I was often too tired to climb up my bunk bed ladders, at University I often slept in the toilet, and at work I filed copy from my phone while sat on the toilet at crown court, rushing to get the story written while balancing my notes on my knee.

Now I can hardly imagine how I coped, but for 14 years I did and so did everyone who tried to deal with ill Rachel day in day out.

For 14 years ill Rachel was totally unpredictable; one day bubbling with energy, the next unable to get out of bed, falling over to get to the bathroom and crying alone in desperate tiredness.

You see since I was a teenager I have lived with a totally invisible illness. To the naked eye I didn’t look sick – well sometimes bloated from steroids others just a skeleton – but inside my body a fierce battle was raging.

I had Ulcerative Colitis, for years they thought it was Crohn’s but having taken out my entire bowel they are now almost sure (well they better bloody be) that it’s Colitis.

To call people with IBD brave is an understatement – stubborn is probably a better word.

IBD is a cruel condition, it comes and goes but never truly leaves us. It flares, or more like springs up, sometimes without rhyme or reason, and ruins everything, leaving you clinging on to life by your fingertips.

Just after second op

Just after second op

The Crohn's Walk

The Crohn’s Walk

During my 14 year battle – now finally (hopefully) at an end thanks to a miracle surgeon and a temperamental ostomy bag – I learnt that a hard lesson. Pain hurts but ignorance is far more damaging.

Shops ignoring my can’t wait card so I literally pooed myself; bitchy comments about my lollipop round face (due to steroids); the needle marks on my arms; my skeleton frame; colleagues moaning about me being on the toilet too long; stares; food tips; comments about my eating; the rude tuts from old people as you use the disabled toilet; and the comparison with cancer – were just some of the things that slapped me in the face during my flares.

Today is World IBD day, and today I have something to say to everyone who has ever used my illness to say something nasty when I felt like I was hanging on by the skin of my teeth, and made me feel a little bit more shit.

To everyone who ever said “well you don’t look ill”, called me anorexic, suggested I eat something, or said “well at least it isn’t cancer’, or in the worst dig of all tried to make out I had got somewhere in life because people felt sorry for me because i was ill.

I want to say to you that I made it, despite your ignorance, and if I can so will many other people.

Words hurt sometimes more than spasms and projectile vomiting, and well staples in the bum.

And I say that knowing that I have said horrible things to people far too many times in my 27 years on this planet.

Back after my first operation – so skinny it hurts

But in the end, for all the haters and mean people in the world (and those who don’t mean it but don’t understand), there are millions of kind people and hundreds of thousands who are going through just what you are going through.

When I first started this blog a number of people said it was a bad idea, that I would open myself up to ridicule and trolls and all the other nasty stuff the internet can bring – they were wrong.

They were also wrong when I posted my first picture of my stoma on Twitter, and I got all the acceptance I had needed for years from so many people with not a single negative remark.

These days I can’t poop or fart the way normal people do, and if someone says something I try to laugh it off. But back when I was a teen it would have mortified me – i would literally have rather died.

Every half an hour someone in the UK is diagnosed with IBD – and that means one other person sitting on a toilet somewhere is seeing their world fall out of their arse and might just be begging to die like I was just two years ago.

It also means that one day I might have to see my child (if I can have them) live through the same thing, a thought that honestly horrifies me.

IMG_7957 IMG_7958So I want to say to the millions of people out there who have Crohn’s or Colitis, you are not alone.

The world is a different place these days – don’t hide in the toilet embarrassed and alone, there are literally thousands of people with IBD who are out there waiting to talk and help and be your friend.

Speak to people, your best friend, neighbour, teacher, partner, parents, you might be surprised but they are probably worried sick about you.

Surround yourself with people who care, and who love you and who you know you would look after if the tables were turned, like my amazing friends, family, boyfriend who have helped me through everything over the years and who leave me totally speechless. 1004908_411240882339946_1764660566_n

Anyone who is nasty, educate them, and if they still won’t listen they simply aren’t worth your energy – in the end it is precious.

Before I break into a Taylor Swift song I’m going to go – but don’t whatever you do in life let more poop get you down it’s a battle enough.

purple-infographic

Advertisements

One thought on “Happy World IBD Day – Ignore the ignorant and mean and keep fighting for awareness

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s