How migraine patients feel misunderstood

Migraine can be an invisible disease, and as a result, it is often misunderstood. Unfortunately, that means people with migraine often report experiences of being judged or mistreated by friends, coworkers, or even medical professionals who don’t empathize. We asked the members of our Move Against Migraine Facebook group to share their stories of times they were treated rudely because of their migraine. Here’s what they had to say.

Insights and stories from the members of our Move Against Migraine Facebook group

Misunderstood at the doctor

“I had an emergency room doctor tell me if I put on mascara it would help me feel better and if I felt better my migraine would go away.” -Janet

“In 1977 a doctor in the emergency room told my mother my migraines were all in my head and I was faking to get attention. I’ve had migraines since I was born.” -Jen

“You don’t really have pain, you probably just want drugs.”  -Kelsey

Impatient Friends and Family

“Again? Another one?” -Victoria

“You must be doing something wrong if you keep having them.” -Carrie

“Suck it up. It’s just a headache.” -Barbie

“I think your migraines are very convenient, so you don’t have to do things you don’t want to do.” -Nannette

“Do you really need to cry so loud?” -Samantha

Judgment at Work

“One of my supervisors took me into her office to inform me that ‘We feel it’s rude you wear sunglasses all the time. You need to stop. People believe you’re doing this because you’re hungover or high.’” -Dannah

“Get off your lazy butt and get back to work. It’s only a headache, it’s not like you have cancer!” -Cheryl

“I was told a headache was not a reason to miss work and I would need a doctor’s note or I would be fired for skipping work for such a weak excuse.” -Karen

“My former boss asked me ‘Um, so how long is this thing going to last because it’s getting really inconvenient?’” -Denise

Unhelpful “solutions”

“Just try some yoga, lose 25 pounds & if you still get these ‘migraines’ (he seriously used those air quotes with his fingers) we’ll order some tests. If you look better you feel better!” -Amy

“You don’t drink enough water.” -Amanda

“If you cleaned properly you wouldn’t have them. Plus I’ve been told to ‘get over it.’” -Heather

“If you stop crying like that, your ‘headache’ will go away. Being emotional is making it worse.” -Jennifer

“Oh you should cut out all sugar, all processed stuff, all wheat, and not eat red meat. It really helped my sister’s friend.” -Nicole

“Try not to think about, take a walk.” -Reyhan

“It’s just a headache. Shake it off, take some Tylenol and get over it.” -Maureen

“Just take some medicine.” -Karah

“It Could Be Worse”

“Nobody ever died from a migraine.” -Janice

“Suck it up. It can’t be that bad.” -Ashley

“I must be pretending because I looked fine.” -Andrea

“An administrator at school told my 15-year-old daughter that she needed to act like an adult and push through the pain.” -Kelley

“Sometimes it’s not the words spoken but the looks in family/friends faces that tell exactly how they feel.” -Cynthia

 

Part of the mission of the American Migraine Foundation is to give the migraine community a voice and a place to tell their story. We want to hear yours. Tell us about your experience with migraine and help us raise awareness about what it’s really like to live with migraine. Thank you for sharing with us!