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Migraine Awareness: Getting People to Really Listen

When it comes to raising awareness about migraine, finding something to say isn’t difficult—there are plenty of startling facts and statistics—but sharing information is not the same as being heard. The challenge isn’t what to say, it’s how to say it. The challenge is figuring out how to reach people who haven’t otherwise had a reason to learn about migraine.

What gets your attention to learn about illnesses?

What gets your attention when someone posts about a cause or illness that you don’t know much about? Facts and statistics? Emotional appeals? Personal stories? Provocative comments? Thoughtful questions? There is no one right way to go about raising awareness; different people are swayed in different ways. But there’s one important element that resonates across a multitude of techniques: connection. Humans are social beings, we love stories about what other people experience, especially when there’s a common thread between their stories and our own. Whatever your message and however you choose to impart it, truly connecting with another person is the foundation for being listened to.

Opening up about the impact of a disease

The most powerful awareness-raising message I’ve ever seen came from a friend who has an autistic child. She is not a writer by training or profession, she’s not even a blogger. She doesn’t see herself as an advocate and doesn’t spend time on awareness-raising. She’s a mom who adores her child and knows the tremendous challenges life has in store. She changed her profile picture for autism awareness month but felt it was an empty gesture. By the end of the month, she decided that being honest and open about life with an autistic child was the best way she could help raise awareness. In a 660-word Facebook post, she acknowledged both the difficulties and the beauty of her child’s life and their family life, her fears and her guilt, the loneliness and isolation from trying to be “strong” and shoulder the burden alone, and the self-imposed pressure to pretend she was fine when she was far from it.

Gripped by vulnerability

Before that day, I would have told you I had a fairly good idea of what autism is. I did not. I knew facts and scientific knowledge; considering a day in the life of someone who is autistic or is the parent of an autistic child is an entirely different kind of knowledge. My friend’s 660 words prompted me to read more about autism and how it changes people’s lives. I didn’t learn more to be supportive of my friend—we haven’t been close for 20 years, though I have fond memories of her—I read it because her courage and vulnerability gripped me.

Throughout autism awareness month, I noticed that some friends changed their profile pictures to puzzle pieces and ribbons and shared statistics about autism. I have no idea what they shared or even who shared it. But I can tell you how this one friend’s story totally changed my understanding of autism.

A grand, vulnerable gesture like posting your story on Facebook is not required to raise awareness. But I hope you will think about the importance that connection plays in such efforts. Maybe you’ll post your own story, like my friend did, or you’ll share a Migraine.com article that speaks to you. Maybe you’ll explain why a particular statistic troubles you or you’ll find the commonalities between your experience and those of a friend with another life-altering chronic illness.

Sharing your migraine story at your comfort level

You don’t need to blanket everyone you know with migraine information—just reach out to as many people as you’re comfortable with in an environment where you feel safe. That could be everyone in your life and social media sphere, a group of people you worship with, a few friends, or a family member. Migraine can feel lonely and isolating, but we are a community. If every one of us commits to sharing the truth about living with migraine with just one other person this month, millions more people would understand how profoundly life-changing this illness can be.

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

Comments

  • Sharon Beckwith-Johnson
    3 years ago

    Chronic migraines are a neurological disease that there is not a cute for. I went from being active to being almost bed ridden and not being able to move my head. I also have sleep apnea which is mild but it affects my heart so that is a big part of the fatigue. I used to be a much more outgoing person and loved to play outside with my grandson, he is 3.
    My husband of almost 17 years is very understanding. He doesn’t get mad if dinner isn’t on the table after work or of I have had a bad day. He days he knows where the kitchen is.
    My daughter does what she can to keep him quite and that says a lot. He’s a firey redhead.
    Right now I have been off work for 3 months and starring extended leave now, since my last Botox injectuon I have had 43 migraines, since March 21.The brain fog, exhaustion, and lack of sleep are reall catching up too me.

  • MigraineSal
    4 years ago

    Another excellent article and here is hoping that people’s stories can help change other people’s understanding of this debilitating disease, which is not helped by those who have a headache regularly complaining of a migraine !

    I had a stonking migraine yesterday ( started Monday afternoon . . . just in time for Migraine Awareness Month ! ) and had to be off sick and spend the day on ice and in bed with bouts of getting up as my neck hurts if I lay too long and that will trigger / aggravate a migraine ! Thankfully appropriate amounts of Pink Migraleve, a dark and cool room / meditation / sleep and my ice packs saw it off, although I know it is still hanging around and will come back to the fore, if I don’t take good care of myself and particularly my neck. Not had one that bad for a while ( thankfully ) but at least I now know that I can ride though them and come out the other side, even though they are far from pleasant at the time, which really does help – especially in the dark of night when it is just you and a thudding head et al. I had decided that if it hadn’t improved by the time I got up again last night that I was going to increase my preventative medication again ( hopefully temporarily ) but luckily it downgraded to just a dull thud that I can just about cope with.

  • Kaynaydian
    4 years ago

    Very well said!

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