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Why You Should Tell Your Migraine Story

Why You Should Tell Your Migraine Story

In a writing class recently the teacher brought up something I hadn’t considered. He talked about why story is important. From Greek myths and the Epic of Gilgamesh to Star Wars (yes, that was a big jump there!), story has been a key part of all cultures. It’s a way we can learn about the world. Sure, we can travel and experience a lot if we want to, but we can’t have a conversation with Einstein, walk through the streets of Rome in 200 B.C., or fly a spaceship in a galactic war. I would hazard to say that stories round out our human experience and make us more connected to the world.

Discovering other people’s migraine stories

So how does this relate to migraine? In 2012, I started to get a migraine attack every single day. I thought I was alone. I knew some people who had migraine, sure, but every single day? I discovered and other migraine sites and forums, and was able to read and learn about migraine. I found the stories of others helpful in knowing I wasn’t weird or unusual. My doctor could provide me with medicine and treatment, but only the community could share my deepest fears, struggles, and triumphs. Then in 2014 I started writing bits and pieces of my own story to share with others. It was incredibly cathartic, but beyond that it seemed to register with many.

That being said, sharing stories within the community is like preaching to the choir. We all “get it” at some level. Though there is power in that, what of the people in our lives who don’t have migraine? What and how should we share with them?

I try, when appropriate, to share as much as possible. If an interested listener hears my story, just like when watching a movie, something happens—they can “walk the streets of Rome” in my shoes. I do like to have migraine statistics and facts at my fingertips, but I feel that stories hold more lasting power because they give other people a window into an experience they haven’t had.

Learning how to make your story relatable

At this point you might be thinking this is all well and good, but how do I tell my own story? Maybe your family and friends are sick of hearing about migraine, maybe you’re afraid you’ll seem like you’re on a soapbox. I find this a common problem and one that I face as well. I sometimes clam up when asked about my migraines because I know the glazed-over look that talking about them often causes the listener. One suggestion I have is, don’t make your stories about migraine. Make them about something anyone can relate to: a first date, a test at school, a trip to the store. Weave the migraine aspect into the story. “Oh man, I was having such a great first date. He actually showed up on time and took me to a nice place. We ordered the same thing at the restaurant—finally a guy who also likes seafood! Then all of a sudden half my vision is half-gone and I’m doing my best to pretend nothing is wrong. I made it through the whole night, and he had no idea!” If it’s about a doctor’s appointment, tell a few details that have nothing to do with your own health. “The doctor is obsessed with cats. She even had a cat statue on her desk.” Finally, use humor whenever you can, even if you have to make fun of yourself. People like a good laugh. “Oh man, let me tell you about the migraine job interview debacle. My aphasia was so bad I couldn’t remember the name of the company!” If you can catch someone’s interest and make them feel like they experienced the story themselves, they’re likely to care more about what you tell them. No soapbox needed.

Lastly, if you’re feeling the need to share, you’re always welcome here. Comment on an article, post in the forums, or share your story. If you’d rather write your story than speak it, you could send your friends and family the link to your story or post on social media.

We all have migraine, but we’re all unique. We’d love to hear from you.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.


  • KatCoffee
    2 years ago

    I’m actually trying to post my story right now, but when I cut and paste from Word into the text box, it loses the formatting and hyperlinks. How do you underscore and hyperlink in this format? I’m in Chrome, if it matters

  • Lisa Robin Benson moderator author
    2 years ago

    Hi KatCoffee,

    I actually don’t think you can control the formatting. You can copy and paste the links. Sometimes the moderators add hyperlinks after the fact. I’m sorry for the inconvenience this causes and still hope you post your story.


  • Maureen
    2 years ago

    I, too, think it’s important to tell your story, because so much of our suffering happens alone in the dark. We hide it. We don’t want people to know. We’re ashamed. We’re faking it in the hopes that we can make it. But telling our stories can help others, often some of those who really ought to know better, to understand and to empathize. For instance, many of my extended family members know that I see a headache specialist, but I think maybe they think it is like seeing a dermatologist for “that one pimple you have”. But when I tell them that my treatment protocol sometimes includes a three day trip to the infusion center, they suddenly understand that a real doctor at a credible institution believes that I have a serious condition worth taking time and spending money to treat. I am maybe not the kooky, hypochondriac with all those crazy symptoms. When I play out the drama and decision-making process that led to that protocol, it helps them understand the shadow world of migraine land. And that when I say I feel like there are shards of broken glass rattling around in my head, I’m not exaggerating, I’m painting a word picture. And when I say it feels like there is a towel stuffed inside, it doesn’t mean I lied about the glass, it means migraine is fickle and changeable, and unpredictable and yet, a familiar foe.
    So, yes, I really think we need to tell our stories, because there are so many to tell. There are so many of mine… and there are so many of us! Imagine how many stories that is!

  • Lisa Robin Benson moderator author
    2 years ago

    Hi Maureen,

    Thanks so much for sharing and I both love and understand your descriptions! I also love how you describe migraine as “the shadow world.” A very apt description indeed. I’m glad your family seems to understand even a little bit more than they used to.

    Be well,

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