My GP is pretty great: she takes me seriously, takes ME/CFS seriously and admits that simply because we don’t know what causes it yet, doesn’t mean it’s psychosomatic. However, there is something about her that annoys me a bit: she seems to think I shouldn’t focus too much on my illness or it will get worse. She thinks I shouldn’t research it and read about it as much as I do, because I am “more than my illness”.
This is an idea that a lot of people seem to have: you somehow aren’t allowed to identify with your chronic illness. They tell you that you aren’t your illness, you have an illness. They tell you that the minute you believe you “are” your illness, you will somehow get worse. That these beliefs will somehow stop you from recovery. In ME/CFS, this is even worse, as there are many doctors dedicated to the idea that this illness is caused by false illness beliefs in the first place. That somehow, if you just stopped believing that you are sick, you will cure yourself. But even if they don’t believe that kind of unscientific sh*t, like my doctor, they still seem to subscribe to the idea that you should not focus on your illness, that it does not define you, that you can’t say you are chronically ill because you are so much more than your illness.
And to some extent, they’re right. I am more than my illness. I am also a daughter, a girlfriend, an introvert, a Christian, a linguist, a writer, a cat person, creative, analytical, empathetic, a bit of a nerd, among many, many other things. But I am also chronically ill. That is a part of who I am. It affects all those other identities. It affects what I can and cannot do, it affects my interests, it affects my daily life. Even on days where I feel relatively healthy, my body is still not functioning properly. I don’t just “have an illness”, I am ill. I actually constantly need to remember that I am ill in order not to do too much, or I will pay for it. Forgetting that I am ill, acting like I am healthy – that is what will make me sicker. That is what eventually will make me crash. When I first started having symptoms, and my doctor told me my blood test was fine and there was nothing wrong with me, I tried to go on with my life and believe it would just go away on its own. And sometimes, I would feel better for a little while. But eventually, I’d always end up back in that doctor’s office again, because my symptoms would always return. Ignoring my illness isn’t going to make it go away. The only thing that allows me to live my life with the fewest symptoms, is constantly planning around my illness and pacing my activities. That is what allows me to have an identity outside from my illness.
What also bothers me is the idea that just because I read and research a lot about my illness, I must be too pre-occupied with it. The problem with ME/CFS is that there is no known cause and no real treatments yet. Most doctors don’t know anything about the illness and many who think they do, think it is psychosomatic and aren’t of any real help. Having this illness requires us to be our own doctors and do our own research. It requires us to join communities of people like us to share tips and experiences. I want to know as much as I can about my illness and my own body, so of course I am going to spend time on keeping up with research and interacting with other chronically ill and disabled people. And of course, my interests and the communities I am a part of are also a part of my identity. If it’s okay to be interested in any other topic and join communities about it, why would it suddenly be detrimental for my health if I’m interested in my own illness?
Of course, it’s important to remember that this is coming from the perspective of a mild patient. If you’re more severely affected, sometimes managing your illness is pretty much a day job – and if you’re bedbound, even that can be an impossibility. An illness can take away so much from you, and sometimes renders you unable to be anything else than your illness.
But no matter how much chronically ill people are affected by their illness, for none of us this is an identity we choose. The reality is, however, that our illness is a part of us that we have to live with and often affects us in every area of your lives. So don’t tell patients they shouldn’t focus on their illness too much or not identify with it. Ignoring our illness isn’t going to minimize its effect on our lives – a proper treatment is.