Why I Stopped Hiding And Started Talking About My Migraines
Last updated: July 2020
“Mom, I’m good at keeping secrets because I always forget them,” my 6-year-old said. We giggled over the reason he was a super-secret keeper and I remembered there was a time not so long ago I was good at keeping secrets — one in particular.
Keeping migraine a secret
There was a secret that was always on my brain — especially on the days it was made my head feel totally toasted. My migraines. I didn’t start out keeping my chronic condition private, but for a time it seemed like it might be my best course of action.
How others responded to my migraine diagnosis
When I was new to the migraine world, I noticed in my initial conversations to friends or acquaintances their responses oftentimes fell into three categories, “Oh, I’m so sorry!” those that knew me well would respond. Then there was the famous, “Have you tried (insert random suggestion here)…?” And of course the misunderstood would reply with, "Those headaches are the worst.”
Explaining migraine to others
After I’d explained to those helpful folk that yes I'd tried taking two Advil and was staying hydrated, I then went on to explain politely about why a migraine wasn’t a “bad headache.” When I was all done...I kept talking. I over-explained my condition to an audience that seemed to want proof. The weird side-glances and awkward silences made me feel like I needed to provide some sort of document that stated clearly I was an official member of Migraines-R-Us.
Migraine is an invisible disease
I get it. Unseen elements are challenging to accept. Standing there talking about an unpredictable disorder that roasts my head and makes me vomit on my shoes is hard to imagine — especially when I look like a fairly healthy person with a questionable medium-length haircut.
There's no test to prove migraine to others
There’s no standardized test to prove that a person has migraines. I can’t take a blood test only to pull - out my results at parties and say, “Hey! See that positive test for Migraineus Ginormous Hemogoblinus? That shows I have migraines.” They only validation I can give someone is my own truth.
When no one believes migraine
There were moments I felt my condition was dismissed and wasn't believed. It was exhausting enough suffering from a chronic illness and now I had to prove I had one? I felt unsupported in a disease that left me feeling isolated on a daily basis. So to protect my head and my heart, I stopped talking about it. If the topic was mentioned, I downplayed it saying things like, “Yeah, migraines are a drag.” People bought that viewpoint more than my actual experience. This went on for years.
We should all talk about migraine
Then I read that nearly 1 in 4 U.S. households include someone with migraines. Even if I’m the first person with migraine disease my new friend has met, I won’t be the last. I began to understand that the only way migraines won’t be dismissed is if they’re talked about by those who have them. Raising awareness for this very real neurological disorder will hopefully (eventually) eliminate the isolation that so often accompanies them. So no more secrets...let’s talk about migraines…
In the past year, has insurance made it difficult to get your migraine treatment?