Tuesday 28 May 2013

Guest Writer - Steph

We asked Steph if we could use her brilliant blog post from her website Imagine Being Different as we thought it would resonate with a lot of people. Can envisage you all nodding and smiling along to this one too!



Since being diagnosed with IBD, I’ve had some cracking things said to me. These are just a few examples of when humans need to think before they speak.
“Oh so you have IBS.” 
And no I don’t mean the people who say “So its like IBS” because I know that those people, are just a little confused. So I’ll explain it to them and then they know the difference between IBD and IBS.  I’m talking about the people who just shrug you off and think you’re an idiot for not saying IBS properly. Somehow, I think I know the difference considering I was diagnosed with it and have been living with the disease for quite some time.
“You’re always getting sick”
Yes I am always getting sick, because my body is constantly working overtime to try and fight this disease, so it means that when a small cold or infection comes along, it doesn’t have the strength to fight that off too so generally its really easy for me to get sick.
“Why don’t you take some painkillers?”
Why didn’t I think of that?!
“It can’t be that bad/painful if you’re out” 
If I stayed inside every time I wasn’t well, I would never leave the house. I don’t complain or let on how much pain I’m usually in because otherwise I would be moaning all the time and as much as it shouldn’t be this way, I wouldn’t have any friends if I was constantly telling everyone how much it hurt, how long I spent in the bathroom, how little sleep I got because I’m always in the bathroom. I suck it up because if I didn’t, I’d be leading an extremely limited life.
“But you don’t look sick.”
I’m sorry I didn’t realise I had to look sick to be sick. I’m sure if my intestine was on the outside, you’d be able to see all the inflammation, the blood and the ulcers but alas, my intestine is on the inside, I can however show you my poop if you really want to see how sick I am.
I’ve actually had a nurse say that to me after a holiday in Greece. I had to be hospitalised for a week because I was so dehydrated and my pouchitis was absolutely awful. I had of course spent the majority of the time lying in the sun because that was the extent of what I could do and the nurse saw my holiday glow and said the above to me.
If I wasn’t so poorly I’m sure that I would have smacked her round the head with my hospital tray.
I use the disabled toilets on a regular basis because it means I can go to the bathroom in peace and not have to feel embarrassed about any noise or smell. Also, its helpful for when there are queues and I need the toilet badly. When I had a stoma, it was a relief to have the radar key in case I needed to change my bag, however I once had a beautiful person say
“Its disgusting that she is using the disabled toilet when there’s nothing wrong with her.”
I was actually busting for the loo so badly that I was afraid I was going to have an accident. What I should have done is stepped in front of him and pooped my pants. Nothing wrong with me now huh?!?!
Last but not least, my all time favourite...........
But at least you’ve lost weight.” 
*Facepalm*
Thanks for the double edged sword there. Not only are you completely dismissing my disease but you’re also saying that I was a little bit on the chubby side of life.
The reason I lose weight when I have a flare is because nothing will stay in my system. I am usually so sick that it hurts to eat, so I don’t and anything that I do have will pass through my system in about an hour. My intestine is so inflamed that nothing will be absorbed so not only have I lost weight but I’m also quite malnourished. But hey, its okay, because I’ve lost some weight.
I know sometimes its people making light of the situation, or its just that others don’t know how to deal with it. Sometimes though, when you’re having a really rough time with it all, the last thing you need is someone making a remark like the above.
What amazing things have been said to you?


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