When you’re told your migraine isn’t “real”
Chances are, if you’ve told anyone about your migraine diagnosis, you’ve gotten some very well-meaning advice from about half those people. “My aunt had migraines forever until she steeped rare Asian mushrooms in a tea made of cow urine—you should try it!” “My uncle had migraines but it turned out he was just allergic to his down pillow.” “I have seen eight thousand ads for Botox, so now’s the time when I ask you if you have tried Botox.”
I, like many of you out there, have heard a lot of advice. I remember that people’s hearts are in the right place and that they have no idea that, in fact, I have tried a lot of things to get my migraines under control.
Another type of feedback we hear frequently doesn’t have the same positive, thoughtful origins as well-meaning advice. This feedback consists of people’s doubt, ignorance, and disbelief. This is the sort of feedback you get that makes you realize that the person giving it isn’t trusting that your experience is real, and you can then decide if you want to make it into a teachable moment or just drop it.
One thing I’ve encountered over and over again is stories from you all about others dismissing your migraine claims. Sadly, a lot of the time this feedback is coming directly from other migraineurs, migraineurs who have yet to really realize that migraine can manifest itself really differently in person to person and from attack to attack.
Here are the types of comments many migraine.com community has had to endure:
Your migraine isn’t real if…
…you can look at a computer screen
…you are able to drive
…you aren’t in bed in the fetal position in a dark room
…you are able to sit up
…you are able to speak
…you are able to move without vomiting
…you are able to maintain a conversation
…you can take care of your kids
…you can’t sleep through the night
…you can sleep through the night
…you can maintain employment
…you don’t see a headache/migraine specialist
…you don’t take preventive meds
…you haven’t tried every single thing in the world to “cure” yourself
…you don’t immediately take the advice of whomever you’re speaking with
Thank goodness for communities, both online and “real-life,” that can connect migraineurs to one another and allow us to learn about the intricacies of this very, very complicated illness. Thank goodness we have advocates and doctors encouraging us to keep track of our migraine patterns so we know how a migraine shows up in our lives. Thank goodness we have supporters—even if they’re just screen names on the migraine.com page or migraine.com Facebook page—that tell us to find another doctor when we tell yet another story of having the reality of our illness be dismissed.
Because I am now a fairly well-known migraine health advocate and writer, I sometimes encounter the reverse side of the problem a lot of you all have. That is to say, instead of telling me that my attacks aren’t real, many people I know—particularly friends and family I have here where I live in Athens, Georgia—dismiss their own struggle with migraine because they simply assume it’s “not as bad as what you go through.” Subjectively speaking, maybe I can agree with that a little bit at times: it’s true that my friend who gets one (count it) migraine a year doesn’t have the same sorts of challenges I do, but it doesn’t mean that her crappy yearly migraine attack isn’t really a migraine. Usually, though, I have to speak up and validate the other person’s experience, saying, “Migraines are a little bit different for everyone, and if you have a headache or migraine that is interrupting your ability to live a full life, I really hope you’ll see a doctor.” My migraine episodes are different than a lot of my friends’ episodes are, but that doesn’t make them any more real.
What do you have to say? Have you ever had the experience of someone claiming that your migraine isn’t real, either online or in person? How did you handle the situation? Or, are you more like me, encountering people who belittle their own experiences because they seem to think there can only be one really sick migraineur present? Please share your comments and stories below, or just add to my list above!