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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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • AmyBabee
    6 years ago

    Same thing happened to me. I had migraine for 10 years before it was officially diagnosed or misdiagnosed as migraine. The funny thing was I was being treated with all the migraine medication but they called it headache. I found out the day I was supposed to take my Dr’s diagnosis and treatment notes for Disability. When I read it I screamed, WHAAAAT???. I asked her why she was diagnosing me as having ‘headache’ and treating me with migraine medications? I mean, with all the symptoms? She had no answer. Goodness! instead of menstrual migraine, they had me down as: headache, amenorrhea/dysmenorhea, painful menstruation!… I have never had pain with my period, ever. I didnt even know the meaning of the other 2 words. I still feel mad just thinking about it even after the correction. Imagine if I didnt see it.

  • tucker
    6 years ago

    I felt this same way about asthma. I suffered with breathing problems all during my childhood and dropped out of basketball after 8th grade b/c I hated how I would “stop breathing” during practice and games. I was sick all the time with “cough” and colds and no one ever did anything. Yet my brother was one of those allergy and asthma kids who went to the doctor and emergency room all the time for his asthma. So you’d think my mom would see the same thing in me!

    I finally diagnosed myself in college when I started running with a roommate. I had been jogging on my own at a snail’s pace but once I tried to keep up with her the “stopped breathing” started all over again. Even then my doctor didn’t believe me. Good grief! Finally, I was working at a hospital after graduating and my boss said I should join his running group. When I told him my problem, he sent me to the allergy specialists and not only was I allergic to everything, I had pretty bad asthma too. Huh!

    Amazingly, the migraines were easy to get diagnosed. It took me a few years to tell my PCP, but once I did he said right off the bat, those sound like migraines. I started with fioricet since they were sporadic but when they increased he put me on topamax. Sadly, they’ve been hard to control ever since, but at least I’ve had good care for them all this time.

  • Not Carly Simon
    6 years ago

    I have had headaches as long I can remember but was not formally diagnosed until 2009. I was 24, a second year law student, and had not been to the doctor since high school. I was having panic attacks and was dealing with depression in addition to having headaches what would leave me passed out and puking in the bathroom. I finally got to researching headaches here and on WebMD and found that I met all of the criteria for migraines.

    When I finally got my butt into the doctor, I was diagnosed with migraines and prescribed Maxalt. A few days later, I got what I now believed was a migraine. I took a Maxalt and promptly passed out but when I woke up, the headache was gone.

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