Your chronic illness is not your fault

A question I get asked a lot is how I came to accept my chronic illness. I also get asked how I manage certain symptoms (especially chronic fatigue which is the bane of my life).

Everyone’s experience of a chronic illness is different. Take inflammatory bowel disease (IBD) for example. I was on an IBD panel the other day with three other patients. All of us were diagnosed at a similar time and we all had IBD yet our experiences differed so much.

Whilst we were all in some version of remission, some were managing through medication, some without medication, and some with surgery. Some of us had stoma’s and some had had their stoma’s reversed and some never had a stoma. Fatigue is a huge issue for some patients, running to the toilet for others and joint pain for others. Some people, it’s all three (I know I was in that camp for a long time).

I tried all of the medications for my IBD, and it still didn’t ‘fix’ me

Once you finally get your diagnosis, the main aim is to get ‘well’. But chronic conditions don’t just fix themselves. In fact, sometimes medication doesn’t work at all. Sometimes, even when you’re in remission, you’re still not what you’d class as well, pre-diagnosis.

When I say I tried everything, I really did try so many different things for my IBD. There were a lot of medications I couldn’t have for various reasons, which limited my options. But I tried the medications offered to me, tried so many different diet and lifestyle changes and guess what, I still ended up needing surgery.

Surgery for IBD isn’t always a worst case scenario…

Don’t get me wrong, surgery is no fun. And my surgery was emergency, to create my stoma. However, something I’ve come to realise is that my surgery didn’t just save my life, it’s given me my life back.

For the two years prior to my surgery, I had a very brief window of being in remission. Yet even those times of remission were filled with pain, running to the toilet and having bad days.

Life with a stoma isn’t always easy, but it’s a damn site easier than pre bag life. It’s just different but personally I’ve found it a lot easier.

You are not to blame for your chronic illness

Which is where we get to the point of today’s blog post – you are not to blame for your chronic illness.

You can do everything right and still flare. You can eat the right things, take your medication and be on it but still feel ill.

But the thing which has helped my mental health with a chronic illness is taking the pressure off myself.

I stopped blaming myself for my chronic illness.

On the days where I have joint pain and can hardly move, I don’t have a go at myself. I don’t feel sorry for myself and think of all the things I should’ve done that would have helped.

Instead, I accept it for what it is. A bad day. I move my day around as much as I can to relax and take it easy. Whether that’s wearing comfy clothes, making space for some down time (whether that’s telly or a nap!) and make sure I drink enough water and eat good food.

So if you’re having a bad day, remember, your chronic illness is not your fault.