Being diagnosed with a chronic illness, and processing that chronic illness diagnosis, is strange. You go through so many different emotions and the only thing I can compare it to are the stages of grief. It’s a strange concept but I found myself grieving the person I used to be and I went through it twice, once with my IBD diagnosis and then when I had my stoma surgery.
It’s likely that you’ve been unwell for some time before you actually get your diagnosis so for many, including myself, the initial feeling I felt was relief.
Relief because it turned out I wasn’t crazy and there actually is something wrong with me. Relief because finally I would be taken seriously and I might actually start to feel better.
It’s only once it hits you that no, you can’t actually get better because you’ll be dealing this for the rest of your life that you start the grieving process. (*can you tell I’m in a flare at the moment and feeling more negative towards my health!)
The stages of grief & processing your chronic illness
It’s safe to say I did have a bit of denial. Even though I knew how ill I was when I was diagnosed with IBD (and now with arthritis too) there’s still part of you that thinks you’ll get better, be ‘cured’ or however you want to think of it.
Even now, there’s still times when I think that this can’t be it, there must be a simple solution. Some people’s denial is much stronger to the point where you don’t actually want to listen or even contemplate the diagnosis.
I think denial is even stronger for young people with chronic illnesses; we’re constantly told that we’re young and healthy and that there can’t possibly be anything wrong with you. The perception people have of you makes it a lot easier to have denial as well.
It’s safe to say that the majority of us with chronic illnesses will go through the anger stage and keep going back to it especially in flare ups.
Anger because you can’t do what you want to. Anger because of the pain you’re in. Just feeling angry at the whole situation.
I used to get angry because I would see my friends and people I was at school with being able to go out and do things whereas I would stay at home and not feel great. I think there was frustration because I hadn’t told many people too so not many people knew fully what I was going through – especially teachers at school.
Even though teachers knew, I wasn’t very good at explaining my condition. It doesn’t help that IBD is all about your bowels which, especially at 16/17, is not the easiest thing to talk to people about.
I feel like bargaining is a strange one but after doing some thinking, I realised that I actually hit this stage too!
I used to think if I did certain things then that was good for me and I’d have a good day. If I ate right and took my medication then surely I’d be fine. To be fair, for some people that might actually work – it’s just that my colitis was always quite severe and never really did calm down!
For me, depression and anger went together. I have such a vivd memory talking to my mum a few weeks before I was first hospitalised and getting upset. I saw everyone having the time of their lives in first year of uni whereas I’d had to come home most weekends, my ulcerative colitis was getting worse and I just wasn’t coping well.
The depression got worst for me after having my first surgery. Whilst I will forever be grateful for my stoma and, the majority of the time quite content with it, I felt so different not only in myself but compared to other people. I knew that I would never have my ‘normal’ body back and that was hard to deal with.
Getting to the acceptance stage is tough but so rewarding once you get there. The truth of the matter is that it can take a long time to get to the acceptance stage for some, and for others they’ll get there a lot quicker.
I was diagnosed with ulcerative colitis when I was 16/17 but I didn’t come to accept and be able to talk about it until a few months after my surgery when I was 18/19. It’s only now, at 22, I even felt comfortable to write this post and I’ll openly talk to people about my colitis as well as my stoma.
However, my arthritis was completely different; I feel like I’ve already got to the acceptance level. Part of me thinks that’s because it’s connected to my colitis so I see it all as one big inflamed mess!
Helpful tips to help when processing your chronic illness diagnosis
It’s all well and good me talking through my own experiences with the stages of grief in processing a chronic illness diagnosis but it’s not much use if I don’t give any practical advice.
The biggest thing is to remember you’re not alone. There are many people struggling with the same illnesses and concern’s; try and find a support group whether that’s in person or online. Join the facebook communities and actually talk to people going through the same diagnosis as you. It offers such insight and they can give you practical advice which will help in your day to day life!
I’ve often talked about how mental health is often overlooked when you have a chronic illness because everyone is so focused on making sure you’re physically well. One of the best things I ever did was CBT (cognitive behaviour therapy); it helped me so much in processing my health and how I process day to day life.
Living with a chronic illness is a constant learning curve; some days you will be fine, you’ll be coping well and feel like you actually have it down. Then you have the down days, the days you’re in a lot of pain or when someone says something shitty to you which makes you question yourself.
It’s safe to say you’ll never be 100% okay with your chronic illness diagnosis but THAT’S NORMAL. We all have bad days but you find ways to get through it and you will be okay.