diagnosis and the construction of disease

You can’t connect the dots looking forward; only by looking back. You have to trust that the dots will connect in your future.  —Steve Jobs*

When I tell people about my lupus diagnosis, I often find myself saying the word “upgraded,” as though I had been in economy class and got bumped up into first. And it always makes me laugh with more than a little black humor, because you have to be pretty sick to be excited about an “upgrade” to SLE, or any other autoimmune illness.

But the truth is that it was an enormous relief to finally have a diagnosis that included a protocol for treatment. For more than ten years I bounced from doctor to doctor, GP to rheumatologist to psychiatrist to orthopedist and back, and they all said “Well, something is wrong with you, we just don’t know what yet.” (In the meantime, I had some great therapists who helped me work through my anger and frustration and sadness, so don’t think I have anything but respect for good psychotherapy!)

As a child, it started with joint pain and inflammation, particularly in my knees and ankles. Despite my frequent fevers and general malaise, I went undiagnosed, though not untreated. Because my symptoms were systemic but primarily joint-related, I was repeatedly tested for RF, mono, and lyme disease. Over and over again. I’m old enough that at the time the diagnostic criteria for Juvenile Rheumatoid Arthritis were very narrow and required a positive rheumatoid factor (mine has always been negative)—  Juvenile Idiopathic Arthritis and Juvenile Chronic Arthritis did not yet exist as possible diagnoses, and despite vascular symptoms, no one tested me for ANA until I was in my late 20s. So they pumped me full of aspirin, and I limped my way through adolescence. Periodically, as is typical in the cycle of flare and remission, my symptoms would magically lift and I would think that I had finally overcome my mystery illness, only to have my symptoms reappear weeks or months later. To call the experience discouraging is a ridiculous understatement. It was soul-crushing.

As patients, I think it’s easy for us to forget that the diseases we are diagnosed with (or not diagnosed with) are man-made entities. I don’t mean man-made in the sense of some sort of crazy conspiracy theory that involves underground bunkers or biological warfare, I simply mean that these diseases— lupus, RA, fibro, scleroderma, and many others—are relatively recent inventions in terms of human experience. These diseases have not been waiting for us since time immemorial, unchanged and universal. They each have their own history, generally one which involves an initial discovery followed by a period where a large number of people try to come to a consensus over sets of common symptoms and behaviors and the best course of action for treating those symptoms. And these sets of symptoms, diagnostic markers, and treatments change over time and we continue to learn about the mysterious (and pretty amazing) workings of the human body. The disease entities are constructed by the researchers, doctors, and patients who interact to try to understand the working of certain bodies during a certain period of time.

As an example of how the process of diagnosis can change dramatically, rheumatoid factor used to be one of the primary diagnostic criteria for RA. It is only within the last five to ten years that doctors have discovered that anti-CCP is a much more useful test for diagnosing and treating RA, particularly in its early stages. And this was not officially written into the American College of Rheumatology diagnostic criteria until 2010! Unfortunately, even as medical researchers begin to understand the mechanisms of autoimmune disease better, and treat the underlying causes—for example with biologics that target specific immune cells—rheumatic and connective tissue diseases bring with them a whole host of stereotypes and negative connotations.

I’ll save my diatribe on women and autoimmune illness for a later blog post (remind me to tell the story about the orthopedist who told me I needed more brisk walks…), but I just want to end by saying that I think it’s important to remember that you are not your illness. Neither you nor the illness you have been diagnosed with is a solid, frozen, unchanging entity. Flares will come and go, symptoms will come and go. Your own self identity will change during the course of your life. Your sense of self and your identity have been shaped by your past experiences and the culture you were born into and currently live in. In much the same way, the illness you have been diagnosed with is shaped by the cultural and scientific world(s) in which you live. The very definition of your disease may change in your lifetime. Don’t let it rule you—acknowledge it, seek to treat it in ways that allow you to live a richer life, but remember that you are an active participant in your own becoming.

*Quote courtesy ZenMoments‘ Twitter feed.

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