Chronically Ill Kat

“She is fighting cancer”!

“Such a little warrior!”

“She is battling illness”.

These sorts of phrases are very common when talking about illness and disability. People often fall back on the metaphor of fighting and battle, or the disability war metaphor. Yet this is something about which the chronic illness community has very mixed opinions: there are those who find this metaphor empowering and helpful in dealing with a chronic illness; but there are others who find it invalidating and a little bit alienating.

You’d be surprised to hear that I personally do not have such strong feelings on the issue. In fact I rather struggle, because in many ways I find it awesome to call myself a warrior, and certainly, when I first got sick, I loved identifying as a badass chronic illness warrior – but on the other hand, I do totally understand and fully agree with the critique that others present. I’m hoping that by exploring this on my blog with you, I will be able to work out exactly how I feel about the issue! 

It suggests we can control our illness

One of the big issues that many people have with the war discourse is that it suggests that as sick people we have some control over the course of our illness. The idea that if we are strong enough and fight hard enough we can ‘beat’ our illness implicitly blames the sick person for being sick. When we get sicker it is because we have not fought hard enough, not because we might happen to have an illness that makes us sicker!

A very clear example of the disability war metaphor discourse being hurtful is the way in which the media discussed Boris Johnson having corona. There were many articles talking about his strength, calling him a fighter, and celebrating his successful win against corona. What this implies, when you look at the flip side of things, is that those who died from corona lost their battle, were not strong enough fighters, and failed.

To me this seems like a very hurtful invalidation of those who died from corona, or suffered more than Boris Johnson. They failed because they did not get better; they did not fight hard enough. It is somehow their fault they are sick, and a personal failing of theirs that they died!

When you put that into the context of a chronic illness, it suggests that those of us who are sick don’t actually want to get well – or at least, not enough to fight for it. Many people with chronic illnesses already feel some level of guilt about not being able to get better because we haven’t tried diet x or exercise programme y. Talking about our illness in terms that suggest we can control it, if we fight hard enough, is therefore very unhelpful to our mental health. We continue to blame ourselves for being sick and are unable to accept our condition.

The disability war metaphor pits us in a battle against our body

When we talk about fighting our illness, it positions the illness as something outside our body – when in reality our illness is very much part of our body and we cannot separate the two. The disability war metaphor then pits our mind and ‘mental strength’ against our body, as if we are fighting our own body and the illness. Yet one of the most difficult and potentially beneficial things to learn, when living with chronic illness, is how to respect your body, listen to it and accept your illness.

Part of learning to live with a chronic illness, particularly an illness such as ME, is learning to listen to your body, live within your limits and learn where to gently push them when needed. For many of us, myself included, it is fighting our sickness, trying to pretend it doesn’t affect us, and therefore not listening to our body, that ultimately ends up making us sicker. It was only when I learned how to pace, regulate my energy a little, and make peace with my new bodily limitations that I was able to develop a life that I was more content with.

Using a metaphor which encourages fighting your body and your illness goes against this gentle acceptance and understanding of your body. If you are fighting it, you can never learn to listen to it properly. After all our bodies are not battlefields, and our illness is not an enemy, foreign to us – it is an integral part of us.

The disability war metaphor places the abled body as the winning outcome

If we consider that losing the battle against an illness means either dying or getting sicker, then the most desirable outcome, when we use this metaphor, is that of winning – and finding ourselves able-bodied. Not only does this suggest some sort of abled superiority, which is rather scary, but it also once again goes against the idea of accepting your illness. For many people with chronic illnesses, getting completely well again and ‘winning the battle’ is not a realistic goal. Many of us know that this is either not possible, or there is a very slim chance of it. Instead, our goal is to accept the illness, and build a life that we are content with, alongside our illness. In which case the goal is very much not getting better. We know that we can still build a wonderful life, living with our disabilities.

As we’ve been shown countless times, and as the disability pride movement points out, chronic illness and disability, in no way mean we have to live tragic and unfulfilled lives. I am very content with my life in many ways. Over the years I have adapted my lifestyle and life goals to fit more harmoniously with my illness. I would very much like to be healthy one day, but I don’t consider that my life, at present, is in any way that of a loser. I am very much a winner at all sorts of things. To suggest any differently – that I am losing at life, or a not strong fighter because I accept my illness and am content – invalidates everything I have worked so hard for.

But I am fighting for my health

Having said all of this, there are battles that I am fighting because I am sick. They are just not against my body. As I have mentioned before, unfortunately a diagnosis and adequate healthcare are not something that comes easily for those of us with chronic illnesses. For many illnesses, it takes years of seeing different doctors in order to get a diagnosis. Just as an example, it takes a median of 8 years for someone with endometriosis to get a diagnosis.

And once there is a diagnosis, to get access to different forms of treatment, or in my case really any treatment or help at all, it takes a fight and a lot of effort. In this case, I would argue that calling myself a chronic illness warrior or fighter is very accurate, because it has seemed, until very recently, that any interaction with a medical professional has been a battle of wills, and something I have had to prepare and train for!

I am also fighting against a world not built for me

Not only do I have to fight for medical help, I also have had to fight for, and work incredibly hard at making my way in a world built around abled people. We live in a world that disables sick people, and in order to have enough money to survive, in order to get a degree, to have social contacts, I have had to fight ableism and fight my way through systems that are not built to help me.

The most obvious example of this is the lack of wheelchair accessibility in my city. This has already, after using it for less than two months, led to situations where I have had to fight for my rights as a disabled person. I was trying to take the wheelchair out on a walk and the path was blocked by a motorbike parked there. So, I left a polite note on it, asking that the person park more considerately next time – but little, everyday battles like this often make me feel I don’t fit in and am fighting to have my needs recognised, in an alien world. And that is not to mention the countless little obstacles like ramps that are too steep, drop curbs that don’t fully drop etc.  

As is described by the social model of disability (the idea that sick people are disabled by society) and as I have mentioned in several other blog posts, I measure myself against abled standards of existence, and hold expectations of myself and those around me that match those of abled people. Therefore, perhaps the single most exhausting thing has been to educate people about my illness and try to get those standards changed. So yes, in this sense I am very much a chronic illness warrior, fighting for disability justice but not fighting against my own body.

So where do I stand on using the disability war metaphor?

I’m honestly not sure that I’m much clearer than I was when I started! I do very firmly believe in chronically ill people’s own choice of words when they describe their illness, but it seems that within the chronic illness community, people mean very different things when they use the phrase ‘chronic illness warrior’. Whilst I find that the blame associated with the metaphor of fighting a battle is personally difficult to process, particularly when someone who does not understand or think much about disability says it (such as the mainstream media when discussing Boris Johnson), I also feel like a fighter in a battle against ableism.

At the end of the day, I think the vital thing to realise and understand is the importance of accepting our illnesses and working with, rather than against, our bodies. No-one should be at war with their own body – but it is incumbent on all of us to fight for our rights when the world does not recognise them.