One of the most common metaphors when it comes to chronic illness, is illness as a battle. An illness is an enemy to be fought against, something that can be overcome. The patient is a warrior, one that battles the disease and eventually, wins. This is a metaphor that is most known for long-term, potentially fatal illnesses such as cancer, but it is also something that is used a lot when it comes to non-fatal chronic illnesses. Many people call themselves a “chronic illness warrior” and describe their symptoms as an ongoing battle.
While I believe metaphors like this can be an important tool for people to make sense of their experiences and tell a story about themselves, it is not something I personally relate to – and in this post I will explain why.
First of all, the idea that illness is a battle implies that you can’t only win, but also lose. I feel like this puts a large part of the responsibility of healing on the patient. It implies that if you don’t recover, it is because you are not fighting hard enough. But in reality, whether you recover or not often has very little to do with your own actions. The majority of chronic illnesses aren’t really things that you can recover from to begin with – you’re just going to have to deal with them for the rest of your life. Although some illnesses function with flares or periods of relapse and remission, even in periods of remission the illness is still there. It often just means you’re currently not experiencing symptoms. And the control we have over our symptoms is often limited. Sure, many illnesses can be managed with medication, diet, or certain exercises – but none of these will cure us and none of these are a guarantee the symptoms will reduce.
Secondly, the idea that having a chronic illness is a battle implies that we constantly have to fight and put in all our time and effort into managing it. And while I can’t speak for others here and we all deal things differently, I definitely don’t want to spend all my limited time and energy trying to improve my symptoms. For me, it is more about finding a balance between keeping my symptoms under control and trying to live my life – especially with an illness, ME/CFS, that has no proven treatments. While I have had periods in my life where I was willing to try out all kinds of supplements and off-label medications, this takes up a lot of time, energy and money – and none of them ended up doing much (or just gave too many side effects). Sometimes trying to chase treatments that only have a small chance of working is simply not worth it. Of course, what you find worth it depends on how sick you are. When you are too ill to function at all, the only thing you can do is put all your energy into trying to improve. But at this point in my life and level of functioning, I’d rather use my limited energy to work and do things I like instead of constantly trying new treatments. That’s not me giving up or losing some kind of battle – it’s just me trying to live my life with a disability.
That’s not to say life with chronic illness can never be a struggle. Sometimes it is a battle, and I understand that calling yourself a “warrior” can feel empowering, too. But often what we have to battle against is not really our illness, but society with its ableist policies and ideas that make it harder to live life as a chronically ill or disabled person. Medical admin, accessing treatments and accommodations, finding work that you can do, navigating relationships with people that might not understand your illness, assumptions about what you can and cannot do and what your life is like, and plain out discrimination can make life infinitely harder. Having a chronic illness or disability in and of itself can definitely be hard, but the ableism on top of it makes it so much more difficult than it has to be.
So this is why I don’t relate to the metaphor of illness as a battle. I am not some strong resilient warrior, battling my chronic illness, to eventually come out on top triumphant. My illness is something that I just have to live with and build my life around, even when there are better treatments someday. The only thing that I am battling every day is ableism and inaccessibility – and the fight against that is something everybody should join.
Len's Cup of Tea 