Identifying as chronically ill when you have a disability

Can you be physically disabled and chronically ill?

I can already hear the cogs turning and the opinions forming. You may have instantly jump to a conclusion or you could have stopped in your tracks. To be honest, this is something I have thought about writing for a while, but I never know how to start. It also feels like I have opened a can worms that I may later regret, but here goes. 

Where did this thought even come from?

The online community for all things disability related is an incredible place. It is where I found some of my closest friends and fellow bloggers. It’s such a good support network and advice hub that really has been life changing. It is this level of understanding which I allow you to not feel alone. 

However, an element of segregation can sneak in from time to time. Yet sitting on the fence isn’t a possibility — it’s probably far too painful to do in the first place! Do you have a physical disability or do you have a chronic illness? If you relate to both, for whatever reason, it can feel like you have to make a decision and stick with it. 

Where am I going with this?

I’m just going to say it. I personally relate to being both disabled and chronically ill, but publicly I have always said that I am disabled. Almost ignoring the chronic illness aspect altogether. In a way this just doesn’t seem right. Can your public and personal identity be different? I’m unsure if I do it for myself or whether it’s to simplify it for others. 

I know some people who refer to their chronic illness and as a disability, and some see it as a separate category all together. This is perfectly okay! I’m not here to say how people should feel or how they should identity, merely explore how complicated this can actually be.  

Having Cerebral Palsy has predisposed me to the label of being disabled. This appears to be pretty fixed and doesn’t want to budge anytime soon. Given this fact, it’s a good job I have accepted this as part of my identity — so much so it’s the focal point of my blog. It’s taken a lot of time for me to be completely comfortable about it, but I do see it as a positive step forward. 

When I was a teenager I also had investigations into chronic pain. I saw rheumatology, neurology, the chronic pain clinic, cardiology and many more. It seemed like a merry-go-round that I was stuck on for a few years of my life. In the end they settled with a diagnosis of AMPS which is also known as amplified musculoskeletal pain disorder/syndrome. Well doesn’t that sound delightful! 

Now technically speaking, this is a chronic illness. I have chronic pain which stems from my Cerebral Palsy, but also pain that comes from AMPS. But I have never publicly said that I have a chronic illness, why is this?

I told you it was a can of worms!

Language around having a chronic illness

I personally believe I’m not chronically ill enough to publicly say I have a chronic illness. Sure, this pain doesn’t appear to be going anywhere anytime soon. It’s also something I have adapted to over the years, even if this means that painkillers barely do enough. 

There’s the fear of impostor syndrome, not only in being chronically ill, but talking about it at all. Yet ignoring it completely doesn’t seem to do it justice. It’s so easy to clump all your symptoms into one diagnosis, even if this doesn’t show the whole picture. It’s easier to manage emotionally as well as practically. However, this can leave you feeling like you’ve failed if you’re not ‘pushing through the pain’. 

For me, it’s easy to just assume any pain I have is a component of Cerebral Palsy. 

What does this mean?

If you have both a disability and a chronic illness it can feel like you don’t quite fit in anywhere. You don’t fit the box of a group of conditions, despite being pushed into a box to receive a diagnosis in the first place!

I can feel stuck in the middle, being able to relate to content of chronic illness bloggers, but also nodding along in agreement to all things disability and Cerebral Palsy. In a way, this might be the case for anyone who has two or more unrelated disabilities. 

So…

I don’t intend to solve language and identity all in one post, but I hope this is the start of a conversation that should be spoken about. You are entitled to be you and have your own identity. Being ‘disabled enough’ doesn’t exist and you are not an imposter. We will all be different, yet it’s the similarities that can form the basis of understanding and validity which can be paramount when having a disability. 

Can you be physically disabled and chronically ill? Of course you can. 

~ Chloe x