Migraine: it’s not just a pain disorder

As grateful as I am that more and more people have become aware of migraine disease and its prevalence, I still find myself in a bit of a quandary when others (including neurologists and other healthcare providers) categorize it only as a pain syndrome

Yes, most migraineurs have debilitating pain with their migraine attacks, but not everyone does. And the level of pain can vary wildly from one episode to the next—some patients even have “migraine equivalent,” which would be virtually unrecognizable to many doctors and nurses who are not well-versed in migraine disease in all its forms.

When I talk to an acquaintance about migraine, that person is sure to comment on how amazing it is I can deal with all that pain all the time (as I do have frequent episodes).  Sometimes I just nod and say something vague (à la “you do what you have to do!”); other times I take the extra time to say that not every attack is the same, and sometimes the pain is the least distracting part of the entire attack.  Having this conversation with others is not annoying in the least.

What is a bit annoying, on the other hand, is when I try to talk to doctors and nurses about my health and they are completely fixated on the pain aspect of my illness

Here’s a question I’ve heard from numerous doctors and RNs I once went to: “During your last attack, how much pain were you in, on a scale of 1-10, with 10 being the worst pain imaginable?”

And here’s a typical answer, depending of course on the most recent migraine attack: “Maybe a 6? I’m actually not in that much pain.  But the migraines really intrude on my life.”

I can see their faces drop ever so slightly.  I am probably projecting, but I do sometimes imagine that telling people that the pain isn’t that bad makes them think my disease is not as big a deal, that there are other more severe cases that deserve their attention more.

But people, let’s face it:  with migraine disease,it’s not always primarily about the pain.  It is about the confusion, the tiredness, the fact that you never know when your day will be stolen from you. It’s about the risk of a migraine always looming over your head; it’s about the impact on your day-to-day life, the impact on your family, the number of hours you sat at work barely able to tackle your to-do list.

(Hint: if you have a doctor who focuses only on the pain part of migraine and not the whole kit and caboodle, you should read my friend Diana’s thorough post about the Headache Impact Test, or HIT-6, here, and fill out the HIT.)

Yes, migraine pain can be tremendously overpowering—I’ve been there more times than I’d ever care to count. But, for me at least, the pain is often bearable, it’s the rest of the disease that leaves me with the lasting battle scars.

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