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5 Things I Wish People Knew About Migraine

Real Talk

May 10, 2022

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Rei Wrd/Stocksy United

Rei Wrd/Stocksy United

by Joseph M. Coe, MPA

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Jennifer Chesak

Fact Checked

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•••••

by Joseph M. Coe, MPA

•••••

Jennifer Chesak

Fact Checked

•••••

•••••

Caring is the first step in developing a better understanding of the impact of migraine.

I’ve lived with migraine since I was in my early teens. While migraine has pretty much always been a part of my lived experience, I haven’t always had the framework to understand the complexity of this neurological condition.

For many years, I assumed that having a headache was common. I was shocked when I first learned that there are people who don’t even get headaches — let alone migraine attacks. I thought to myself, “How is that even possible?”

Over the years, I have come to understand migraine much better. Here are five things I wish people understood about living with migraine.

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It’s a deeply personal condition

While those of us with migraine have empathy for one another, it’s important to remember that migraine is personal in so many ways. For instance, what works for me in terms of treatment might not work for you. In fact, what helps me might even trigger an attack for you.

Migraine can also manifest differently from person to person. The way in which my body experiences migraine is different from the way someone else’s body experiences migraine.

Migraine also impacts our personal and professional lives in different ways. I’m fortunate to be able to have a career and stay active in my community, but others may experience disability and isolation due to migraine.

The takeaway: Don’t judge others based on your own burden or based on what you see about migraine on TV or Instagram. Be kind, and understand that we all experience migraine differently.

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You might not be able to see my pain

I could have a migraine attack and you might never know.

I think many of us who live with migraine become great at hiding our pain. I think we do that because we don’t want to burden others, or we don’t have the energy to ask for help or answer questions.

You should ask before offering medical advice

While I personally always want to learn more about my disease, and how others cope with it, unsolicited medical advice can be frustrating.

Considering my work at the Global Healthy Living Foundation, and the fact that I’ve lived with migraine for so long, I’ve likely heard of or tried any remedy you might suggest.

I know that advice is often coming from a place of caring, but please resist the urge to offer medical advice. Instead, maybe try asking me what I’ve tried and what works for me.

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Accessibility should be prioritized

For me, light is an almost daily struggle. Overhead artificial lighting tends to be worst, so I may not be my best in a meeting or presentation, or at a social event with artificial lighting.

For others, sounds and smells can be triggers, so you may want to reconsider that extra spray of perfume or cologne before meeting up with a friend or coworker who lives with migraine.

Offer compassion to people living with migraine

If you’re reading this article, you either live with migraine, or you care about the cause.

Caring is the first step toward developing a better understanding of migraine. It’s important to view each person living with migraine as a whole person.

We want to be fully present in our lives and in yours, but at times, the condition causes us to miss out on activities. This can lead to feelings of guilt or shame.

Give us space to talk about the impact of migraine on our mental, emotional, and physical health. This space can mean a world of difference to us.


Join the free Migraine community!
Connect with thousands of members and find support through daily live chats, curated resources, and one-to-one messaging.

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About the author

Joseph M. Coe, MPA

Joseph Coe, MPA, is the director of education and digital strategy for the Global Healthy Living Foundation (GHLF), an international nonprofit organization representing people with chronic illness. He is also the host of the podcast “Talking Head Pain” where he confronts head pain head-on through interviews with individuals who are impacted by headache disorders. Outside his work in the headache and migraine community, Joe serves as the vice-chair of the Rockland County Pride Center’s board. You can find him through his podcast, at GHLF, or by connecting with him on Twitter or LinkedIn.

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