Tips for Becoming a Migraine/Headache Advocate

As Migraine and Headache Awareness Month ends, you might be inspired to become an advocate yourself. Excellent! CHAMP and its member organizations have great suggestions for specific things you can do to advocate for migraine patients.

But how do you know where to begin? What if you’re not a clinician or scientist? Why would someone listen to you? Here’s the advice I give to friends about finding their way as advocates.

Start in your wheelhouse.

To become an effective advocate, start “in your wheelhouse.” Think about the situations that make you feel like you’re the best version of “you,” the person your friends like and trust. Are you shy? Outgoing? Organized? Creative? When you do anything as part of a group, where do you fit in? That’s a good place to start.

  • If you’re shy, start by sharing an article from CHAMP and its members on your social media accounts. You don’t have to see people face-to-face and you can respond in your own time.
  • If you’re outgoing, try speaking out in your social circles/organizations about making events less triggering for migraine patients (such as prohibiting strobe lights or keeping music/noise levels low).
  • If facts and figures are your thing, share fact sheets from CHAMP and its members to show people that headache disorders are real, pervasive, and disabling.
  • If numbers make your head spin but you can persuade anyone with a story from the heart, try telling people about the challenges of living with a headache disorder, like the moments you miss with loved ones or the difficulty you experience doing everyday things.

Starting from your wheelhouse builds your confidence and your credibility, two things you need to be an effective advocate.

Do your homework.

The migraine world has changed a lot in the last few years, from the treatments available to scientific knowledge of migraine pathophysiology to public awareness. Do you know how those new treatments work? Why it took so long to develop them? Or why so many people don’t get adequate migraine treatment? Advocacy groups have done the homework already and they’ll share it with you.

You can find trustworthy information on the CHAMP website and the websites of its members: fact sheets, handouts for clinicians, links, podcasts, interviews, news and more. Get on their email lists, follow their social media and you’ll stay up to date on new information. Doing your homework makes you a more credible advocate, and when people see you using good information, they’ll trust you and tell others you’re a good source.

Use props.

One of the best tools I’ve ever used to advocate for headache disorder patients is soft and machine washable: the t-shirt. It’s a polite and extremely effective icebreaker.

Many people never meet anyone who validates their experience as a person impacted by migraine. But if you’re wearing a t-shirt, hat, pin, sunglasses or other prop from a migraine or headache event or fundraiser, you give them social permission to ask you about it. If you started in your wheelhouse, you’ll know where and when to wear your shirt so you can be ready to answer questions confidently. If you’ve done your homework, you’ll know where to send them for good information. And you’ll be supporting the migraine community every time you wear it!

Practice, practice, practice.

I can’t remember what I had for breakfast, but I can still recite the slogans of radio stations I worked at decades ago. Why? I repeated them hundreds, maybe thousands of times! Whether you’re drafting answers to tough questions for social media or perfecting your spoken “elevator pitch,” practicing the things you use most as an advocate will help you do them more smoothly and effectively. Try practicing into your smartphone video or bouncing things off a friend. You might cringe at first, but soon you’ll be so prepared you may find yourself in demand as an advocate.

Don’t feel obligated to do everything all the time.

Advocacy starts with self-advocacy, and that means knowing when you need a break. You do not have to do all the things all the time.

If someone’s clueless comment on a social media thread is making your blood pressure skyrocket, it’s okay to disengage. If you’re dying to read that new blog post but you’re having a migraine attack, do it later. Some days you may be raring to go, and others you’re wiped out. You might know the perfect thing to say in THIS conversation but have no idea what to do in THAT one.

The expression “your mileage may vary” or YMMV isn’t just about fuel efficiency in cars. I use the acronym YMMV to remind people that everyone’s migraine disease or headache disorder is different, but it applies here, too. Your capacity for advocacy may change daily, even hourly. Accept that and work with it. It’s a marathon, not a sprint.

Call for backup when needed.

Maybe you think a certain battle is important, but you’re worn out. Or you don’t have the credentials or experience to counteract stigma or bad information in a certain situation. Or it’s too big an obstacle for you to fight alone. Call for backup!

The patients, professionals, and allies in the headache and migraine community stick together. We support each other’s events, share resources and often tag each other into the bigger battles. We’ve successfully pushed back against problems from “the migraine pose” beauty influencers trend to insurance coverage for treatments–because we did it together. No one of us is as strong as all of us.

Love your squad.

If you’ve made it this far, you probably noticed how much migraine and headache advocates depend on and care about each other.

Migraine disease, cluster headache and other headache disorders rob us of careers, educational opportunities, social support, financial security and more. But they also created a squad of the kindest, toughest, smartest, most compassionate and loyal people I’ve ever met. I’m proud to be part of such a magnificent squad.

Ready to join us? Brush up on your homework, grab your t-shirt and come on in. We’re ready for you!


Lisa Smith

by Lisa Smith
Association of Migraine Disorders

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