The Validation of a Diagnosis
In the summer of 1993 when I was just 13 years old, I suffered through what I think was the first major migraine attack of my life. I had had issues before with what I thought was an overexertion headache, but, in retrospect, it wasn’t until that hot hot day in July 2013 that I had a very severe attack. (I’ve outlined that experience, to the best of my memory, in a blog post you can find here.)
As these “bad headaches” got more frequent over the years, I’m sure I must have mentioned it to my family and to my doctor now and again, but I can’t clearly remember. I don’t recall thinking of them as a major factor in my life. True that by senior year of high school I often skipped lunch or study hall to nap on my desk in French class to fight the oncoming headache and fatigue. True that many afternoons I’d get home from school and promptly go to sleep for 2-3 hours in order to wash away the head pain. Surely I didn’t think this was normal, but for some reason I didn’t think to talk to friends about it or seek medical help until later.
When did I first start taking my illness, then undiagnosed, seriously? At one point I went to a pediatrician who told me to drink coffee and take Excedrin Migraine even though I told her it didn’t always work and that I was worried I was already doing too much of that as it was.
In 2001, a full 8 years after that memorable migraine that took place in the throes of puberty, I saw a new doctor who diagnosed me in ten minutes flat. After all that time, all those lost days, all those over-the-counter pills, all those dinners missed and homework assignments eschewed, I had a diagnosis and a treatment. The relief was like nothing I’d ever felt before. These weird episodes weren’t just something I was being a wimp about. I had a real disease: I had migraine. I felt legitimized.
Perhaps the naming of things shouldn’t be so important; health issues should be taken seriously if they are impacting people’s lives, even if they don’t have a specific name just yet (or ever). But the power of diagnosis is real. It legitimizes.
I’d forgotten how validated I’d felt upon hearing the name of my illness until I was recently, definitively diagnosed with an autoimmune disorder that’s been plaguing me for several years. Once my rheumatologist told me that yes, indeed, I had psoriatic arthritis, I felt such a flood of relief when I knew that the joint pain and skin problems and fatigue and aches and pains and all that jazz had a name. I actually started to simultaneously cry and smile as I hung up the phone with my doctor. Suddenly I remembered: the last time I’d felt that way was many years ago when I was diagnosed with migraine.
Have you been formally diagnosed with migraine? How did (or didn’t) the official naming of the illness impact you, emotionally or otherwise? Do you value diagnoses or find them unimportant compared to the ins and outs of the diseases themselves? I’d love to hear from you.
Have you taken our Migraine In America Survey yet?