I see their expressions change the moment they hear I have an illness, the smile of a moment ago replaced by a look of pity disguised as concern. They ask how I’m doing in a hushed tone. They ask what my surgery was for, I tell them I had my colon removed. I see the question in their eyes, so I tell them I have a bag. The look in their eyes makes it clear that I am not normal, they feel compelled to feel sorry for me, my life is now vastly different to everyone else’s.
Now that I use a white cane to help me get around as I can’t see too well, I seem to have attracted more pity.
But why? Why should I be different? Why am I made to feel that there’s something ‘wrong’ with me? Surely, the fact that I’ve overcome two major surgeries and I’m still smiling deserves celebration and joy, not sorrow? I don’t feel any different. I don’t feel as though my life is over. I don’t shed bitter tears because my body is so different to everyone else’s. I’m actually rather pleased that Allah gave me the ability to serve His Deen. I tried my best to teach and fulfil my duty and didn’t let IBD (Inflammatory Bowel Disease) hold me back… Most of the time. I worked 13-hour shifts. Delivered talks and ran classes. Held down a job with responsibilities.
Every time IBD knocked me back, I’d be determined to fight back. Doesn’t THAT define me more than a diagnosis?
But I wasn’t always strong. There was a time when I took their words and looks to heart. I felt disgusting, abnormal, rotten to the core. Straight after my operation in 2013, a great many well-meaning people offered their condolences because I had to live with a bag for the rest of my life. I could see how they felt so sorry for me, it was in their eyes when they came to see me. Someone even went as far as to tell me not to mention my ostomy to anyone, ever, and keep it hidden. No one would want to marry me, she said. Better to hide it, like a shameful, dirty secret. Because poo is disgusting, right? And here I was, daring to poo out of my tummy. My small intestine had the gall to show itself. I’d look at it, this little bit of me that was about the size of a cherry tomato and yes.. I admit I felt ashamed.
No one wanted to talk about it. It was a lot to deal with. I’d asked for this operation but that just made things harder. I felt I had to be a woman and get on with it because it was exactly what I’d asked for. How could I tell anyone that I was finding it all so difficult?
I’d recoil in embarrassment every time my stoma made a noise. And there were noises. Oh my goodness.. My stoma would fart, make popping noises, squeal, squeak, whistle and make all sorts of rude noises. I have no control over it so it was mortifying.
How different I was then. Now I ask myself why the Muslim community is so intolerant to illnesses and disabilities. Why is being different treated as something shameful?
There. I’ve said it. Intolerant. You may be offended by these words. You may want to remind me of the way our Prophet (SAWS) treated the disabled, weak and poor. With kindness, acceptance, love and understanding. But I know this just as well as you do. And that’s what upsets me more. We have a full moral code to abide by yet many choose to ignore the bits that don’t fit in with their prejudiced ideals.
All these insecurities, horrible thoughts of being not good enough, abnormal and wrong and believing the vicious unspoken thoughts led to a very depressing few months. Suffice to say I hated my bag. Ironic really, since I’d fought with my family and persuaded the doctors that I wanted this surgery.
I saw some info about an IBD event posted on Facebook. It was by patients, for patients and only a few minutes away from my house so I decided to go. I still remember how nervous I was. I’d never met anyone else with an IBD before, let alone a stoma.
It was quite literally life-changing. I heard a few patient stories and then there was a talk by a girl called Meg. I sat and listened to this incredibly brave, smart, beautiful girl talk about her experience with IBD and her bag plus numerous surgeries while studying at university and her courage shone. I was awed. She was straight-talking, funny, informative, positive and pretty damn awesome. Still is, in fact. I’m honoured to call her my friend 🙂 I realised something that day. I was the one holding me back. I didn’t have to be ashamed. There was nothing wrong with me. Big deal, we all need to go to the loo. Some of us just go a bit differently, that’s all. Why had I let people control my thoughts?
That was the turning point for me. I started talking about it with my family. It took a while for them to get used to that but I was determined to make it seem normal. I flashed my bag a few times which didn’t always go down well but what can I say, I’m wild like that 😛
Now, I’m proud of my stoma. Heck, it’s been through a lot! It pushes poop out all day, the least I can do is show it some love 😉 plus it looks cute.
Woe betide anyone who dares tell me that there’s something wrong with me. I question them outright. They usually mumble and walk away. I’m quick to point out how happy I am alhamdulillah. If my Stoma makes a noise, I calmly explain what it is. Because we need more awareness. No one else should be made to go through what I did. Living with UC was no picnic. This bag has given me my life back and I’m determined to do as much as I can, visual impairment and all. Last week I delivered my first talk in six months. I’m slowly getting back to the things I used to do. And I WILL make the most of this chance I’ve been given, God-willing.
Yesterday something made me think back to the pre-IBD me. I realised I’ve changed, but I’m not actually that different. I’m still me, but with a kickass attitude I didn’t have before. Thank you, IBD.
I’m going to keep rocking that bag.