What People Don’t Understand About Chronic Migraines (From Someone Who Has Them)

Currently smack-dab in the middle of a lifelong battle with chronic migraines, I’ve come to learn that those who haven’t directly experienced the struggle really have no idea what we’re dealing with. I’ve heard little barbs and phrases that show a lack of understanding and sometimes a lack of empathy for this invisible illness. Read this so the next time someone you love has a migraine, you can better support the people in your life struggling with this debilitating neurological disorder.

It isn’t “just a headache.”

Here’s tip #1 for talking to someone who deals with migraines: Never say that it’s “just a headache.” I heard this often when I had to explain to teachers why I missed yet another day of school, or from bosses who couldn’t understand why I couldn’t come in to work. It’s a headache and a sick feeling of queasy nausea. It’s a headache that feels like my head will snap off my neck or like I’m getting stabbed by a literal ice pick. It’s a headache and so much more.

When we say “debilitating,” we mean it.

Inevitably, when you talk to someone who deals with migraines, the word “debilitating” comes up. I’d like to say that we’re exaggerating, but we really aren’t. When a migraine is bad enough, there are things we just can’t do. Driving, looking at screens, being out in the sunshine–all of these are a no-go. All we can really do is lay in a dark room and hope that this intense pain, nausea, and sensitivity to light and sound will soon go away. Until then, we really can’t do much of anything. We’re not being pansies, too sensitive, overreacting. It’s real.

Mentioning you had a headache once isn’t helping.

If I had a nickel for every time someone attempted to commiserate with me by telling me about the one time they had a headache…I’d have several dollars. I know you mean well, I really do. But mentioning that you’ve spent 99% of your life headache-free just reminds us of what we’re missing. Instead, just listen with empathy. Say how much it must suck to have migraines. If they’re in the middle of a migraine, get them a glass of ice water, say “I hope you feel better soon,” and let them sleep. Reminders of a life we may never have is really not what we need.

Migraine triggers are mysterious and elusive.

Here’s a shitty thing about migraines: what helps one person might hurt another. I can’t have caffeine because it’s one of my triggers. For others, caffeine helps. (Which is why Excedrin Migraine has caffeine in it. Too bad I can’t take it.) When migraine sufferers get together and compare notes, we often hear about people feeling better from certain medications and treatments that we’ve already tried with limited or no success. Just know that if you mention the cool new treatment that helped your aunt, that might not help the person you’re talking to. We love to hear every suggestion under the sun though, because you never know. Maybe this time will be different.

We aren’t using our migraines as an excuse.

Chronic migraine sufferers such as myself have 15 or more headache days a month–that’s a requirement for the diagnosis. For people who get them that often, we’re never using our illness as an excuse to get out of things. No need to roll your eyes when we call in sick. When you miss this much of life because of an illness, you’d give anything to be normal and do all the things everyone else does. When we say we have a migraine, believe us.

We hate that we’re unreliable, too.

Speaking of which, chronic migraine sufferers really do miss out on a lot of important events, moments, and milestones. We wish we didn’t have to beg out of so many things. We’re sick of our migraines sometimes making us bad friends, family members, and employees. Believe me, you’re not the only one that thinks this is annoying. It also means that if our migraine is “mild,” we’ll probably do the things we said we will so as not to miss out. Yes, we’re suffering, but we’re doing it to be with you.