On Living Without a Diagnosis
“A diagnosis is just a tool to get you what you need,” said a good friend of mine, by way of his therapist. His statement particularly resonated for me because for a long time I’ve been a woman without a diagnosis. This article is about why I am finally OK with that.
First of all, it’s not entirely true that I don’t have a diagnosis: I’ve been given many different diagnoses by many different doctors. Some of these labels are simply descriptions: atypical facial pain, idiopathic neuropathy. Some of the labels don’t really fit me or have that lovely word “Syndrome” at the end of them, and I’ve become so aware of that word I eventually started telling people, jokingly, that I simply have Syndrome. Some of the labels given to me were taken away later, misdiagnosis: “you don’t actually have asthma, you have paradoxical vocal fold movement!” (a voice disorder that mimics asthma).
I have learned some huge lessons from all my time spent in the medical-industrial complex: doctors don’t have all the answers, and that a good doctor is one who says, “I don’t know.” Also, chasing after a diagnosis, endlessly, is a game with steeply diminishing returns. You might get a diagnosis that is wrong. You might never get one at all that gets you what you need, especially if what you need is outside the medical system entirely. I spent hours and hours with doctors and nurses, trying out dozens of medications, and in the end I accomplished very little. Meanwhile I invested all kinds of desperate hope that the next specialist might be able to help me. I am not advocating giving up hope: I am advocating having realistic expectations about the medical system. Investing all my hope, time, and energy in finding a diagnosis and/or treatment for my ailments was not effective nor enjoyable. Years later, I am basically in the same state of health that I was when I first got sick.
I have reached a place where I am quite comfortable not having a diagnosis. I’m sure the medical system does not agree with nor support this stance. Everyone must have a label, otherwise how will they know what box to put us in, which specialist to send us to?
I say about myself that I have chronic pain and illness. I have a disability. If people want to know more than that, I will tell them about my experiences, my feelings, my activities as a disability activist, the way I live my life. Many people seem to want a label, and for a long time I did too: something to say to the pharmacist, the people at work, my extended family; something simple, something people could understand. People understand things like migraines, like diabetes or anemia.
There are certainly concrete benefits to having a diagnosis: If I had a diagnosis I could use Google to learn more about my illness. I could perhaps find support groups populated by people with my same illness. I could perhaps get government disability benefits. These things are not impossible to get without a diagnosis, but they are harder to find. There are, for example, support groups and counselors for people with chronic pain, which my medical system eventually referred me to.
But what I really needed to find was the social justice community. What I needed, and eventually found, was disability identity. Right here are the tools I need to help me live a life with pain and illness. Here is a supportive community, coping techniques, theory, friends. A person doesn’t necessarily need a diagnosis to live here. ?