For a while now I have struggled with whether or not to write this post.
I wondered whether or not it seemed attention-seeking or vaguely obnoxious.
But then I have nights like these and I think, fuck it. What’s the worst that can happen?
In July 2015 of last year I started showing symptoms of Crohns. At first I thought it was food poisoning, but then… I didn’t get better.
By January this year it was official. I was diagnosed.
For those of you who don’t know what Crohns is, it’s an autoimmune disease of the most embarrassing variety. But for the most part, aside from the weight loss and leg rashes, it’s invisible.
Which means I spend a lot of time telling people about my illness. Because, on the outside, 9 times out of 10, I look fine. I have to explain why I’m unable to do certain things and that I’m not well because otherwise they simply don’t believe me.
But you’re young. I can see them thinking. You look fine to me.
They don’t get to see the hours I spend in the toilet (thank god.) Or the sheer amount of pills I have to take at the beginning of each day. Most people haven’t seen me at my lowest, crippled over and crying because the joint pain in my leg is just that bad and it’s simply not fair.
They don’t see the 38 cm of the inside of my stomach that is covered in ulcers and inflamed.
“Can’t you just change your diet?” Some people will say.
Yeah, okay. Because if it were that simple I wouldn’t have done it already? It’s an autoimmune disease, it is my immune system attacking an infection that isn’t there. I can change my diet and yeah it might help a little, but it won’t stop my jobs-worth of an immune system from working over time to cause me pain.
“Sorry, I didn’t realise you were a fucking doctor.” I have to refrain myself from saying.
Because the reality is I’m not angry at them. (Well, maybe a little bit.) I’m angry at myself, at the body that I feel has betrayed me.
And then here we are, nights like this. Where, I’m not in pain but I’m uncomfortable. Where it feels like I have cotton wool stuffed inside my stomach and for the life of me I can’t sleep and I can’t decide if it’s because of the steroids I’m on or because of said uncomfortable feeling.
So I find myself scrolling through facebook and instagram pictures looking over photos and then I start to do this thing where I think to myself “Oh that was before the illness” or “Oh I was at my worst there…”
I separate things into before the illness and after.
And I never like the results.
Because the fact of the matter is this. I will never be healthy like I was before again. I am on the right treatment now, and I am already feeling a lot better than I did six months ago, but the simple, cold-hard truth of the matter is this. Things will never be the same. I will always be on immunosuppressant’s, heck my dose may even go up! I will continue to have regular blood tests, and I’m positive that there will be a fair few more colonoscopies and MRI scans in my future.
And that’s okay. As long as the treatment works (fingers crossed) and allows me to live my life as healthily as can reasonably be expected, I will not complain.
(That’s a lie, I might still complain a little but not nearly as much.)
What I don’t want to do is let my illness define me. Yes, it’s a part of my life and I can’t change that. But it’s not who I am.
I am first and foremost, a person. A girl from Brighton; eccentric and weird with a love of tattoos and red hair dye, an obsession with my dog, a habit of reading too many books at once and of singing loudly in the shower and a thousand other things I haven’t even discovered yet. Oh and a fierce passion for writing.
So that’s what I’ll do, I’ll write about it. And maybe someone else who is going through something similar can take comfort in the fact that they are not alone.
It’s funny, we have no idea what we are capable of dealing with until we are forced to do jus that. I had no idea the amount of pain I could stomach (haha, stomach, get it? I’ll show myself out…) until there was no other choice but to push through it.
But push through it I did. And now that I have seen myself at my worst, I know my own strength. It’s not a beautiful strength, far from it. It’s an ugly, wallowing, cynical thing – but it’s there and it’s mine and I’m grateful for it.
So, to anyone else out there who might be going through your first treatment of steroids, or preparing for your first colonoscopy.
It’s not pleasant. It’s not fun. And it certainly ain’t pretty.
But you will get through it and six months down the line you’ll have your first few really good days. You’ll have a moment when you’ll realize it’s been a week since you last threw up a meal, or that it’s been THREE WHOLE DAYS since you had to go to bed at seven with your hot water bottle clutched to your stomach, or (my personal favourite) your first time sitting through a decent dinner and actually enjoying it.
It will be hard but it will be worth it.
Best wishes interweb,