What Does Migraine Look Like For You?
Every year, Migraine Meanderings asks our migraine community to participate in the Migraine Behind the Mask awareness campaign. This migraine advocacy campaign aims to help people without migraine better understand what life with migraine is like. Migraine is a highly stigmatized disease, and our campaign lets people with migraine know they are not alone.
Educate Yourself, Educate Others
The campaign theme for 2023’s awareness video is “Educate Yourself, Educate Others.” The video highlights multiple migraine warriors from across the country, with a variety of headache disorders. This includes chronic and intractable migraine, hemiplegic and vestibular migraine, and occipital neuralgia. They each shared a small snippet of what life is like “behind the mask” – what they think or feel when others aren’t looking. Or, the one thing they wished others knew about migraine. The video was released in June during Migraine and Headache Awareness Month.
In sharing details of their migraine lives, participants have given us a great deal of insight. Elizabeth shared that migraine steals time away from making memories with her family. Lise explained that just about anything can set off a “firestorm” in her brain. Anikah wants us all to know that she is more than her condition. And Raeanna reminds us that just because we don’t see her migraine, that doesn’t make it any less real.
Migraine Advocacy Is Empowering
Our migraine community has told us using their voice to share their experiences and educate others helps them find purpose in their pain. People with migraine often feel like that have very little control over their condition, and advocating for themselves and others is empowering. By participating in migraine advocacy activities, they feel more in control as a result. We are incredibly grateful to the volunteers who participated in this project!
How To Participate In Migraine Advocacy
If you would like to use your voice and raise awareness about migraine, there are 3 ways you can become involved:
- Legislative advocacy. This is what comes to most peoples minds when they hear the word “advocacy.” These advocates spend their time meeting with local, state, and federal legislators to discuss and ask for support of pending legislation that will help people living with migraine. They work to ensure laws are in place to protect people living with chronic conditions. You can also participate by writing letters or making calls, and meeting with legislators virtually.
- Patient advocacy. Patient advocates raise awareness about their migraine in several ways. They may have a blog, website, or volunteer with a non-profit that focuses on migraine. Often, they use social media platforms to raise awareness and share their personal experiences living with their disease. Their goal is to educate others on life with migraine, and offer ways to improve it. They promote and participate in fundraising activities.
- Personal advocacy. This is when we stand up for what we need in our personal lives; at home, school, and work, with our medical team, and our family and friends. We get the courage to request reasonable, ADA accommodations at work and school. We create a home environment that does not trigger or worsen migraine symptoms. We tell our friends and family what we are going through, and exactly how they can best support us. We continually work with our doctors to get an accurate diagnosis, try new treatments and therapies, and find the management plan that is most effective for you.
Migraine remains a highly stigmatized condition. By using your unique voice and sharing your personal migraine journey, you are helping others better understand that migraine is more than “just a headache.”
Let us know…
Have you shared your personal migraine experience with others? Have you participated in advocacy or fundraising events? If you would like to participate in Migraine Meandering’s advocacy or fundraising activities, please email us at firstname.lastname@example.org
Thank You To Our Generous Sponsors
Migraine Meanderings is grateful for the funding that made this project possible and we would like to thank our 2023 sponsors: Pfizer, Abbvie, Amgen, Lundbeck, Theranica, and Neurolief. Without our industry sponsors, we would not be able to provide this program and help raise awareness about migraine. Together we are making a difference!