Ways To Get Involved In The Migraine Community
Written by: Nicole Safran, MPH
I was diagnosed with chronic migraine about seven years ago. I initially felt alone, focused on my pain, and unsure of what my future looked like. Over time, I became involved with many different migraine organizations. My involvement in the migraine community helped me find a purpose amidst the pain. I was able to connect with other people living with migraine and other headache disorders who understood the challenges I faced.
Some of the programs I have participated in include:
Association of Migraine Disorders
Shades for Migraine is an annual global awareness campaign on June 21 that encourages everyone to wear a pair of sunglasses to recognize the 1 billion people who live with migraine disease. My first migraine-related event was standing in line for the Today Show with other participants from the NYC area to promote the mission of Shades for Migraine. Although it was pouring, I felt empowered and made my first migraine friend.
“Shades for Migraine helped me start so many conversations around what migraine is. I’ve had conversations in grocery stores, in waiting rooms for doctors & with healthcare providers wondering more (and wanting some for their patients or themselves), physical therapy, the subway, and more. The purple sunglasses are such a great conversation starter. I am an introvert, but chronic migraine left me feeling isolated & alone and the migraine community helped me realize I am never alone. Shades for Migraine helped me branch out and share with others they are not alone with migraine either. I was surprised how often people told me they didn’t realize migraine was a neurological disease or it could have so many symptoms or thank you for sharing resources with me. Wearing those purple sunglasses filled me with pride knowing I can help make a difference in people’s lives just by sparking a conversation.”
This past year I was part of Shades for Migraine’s Community Leader program and helped spread the word about migraine disease in my community. I distributed hundreds of purple sunglasses with the Shades for Migraine logo to headache specialists across NYC, post offices, libraries, friends who lived with migraine to share with their networks, neighbors, and my family. Through wearing my purple sunglasses and my Shades for Migraine t-shirt, I had multiple conversations with people saying they lived with or knew someone who lived with migraine disease.
Applications to be a Community Leader are open from February 1 – February 15, 2023. Learn more about the Community Leader program here.
Danielle Byron Henry Migraine Foundation
Migraine at School provides resources for students, parents, and educators to help students with headache diseases thrive in school. I likely had undiagnosed abdominal migraine as a kid, and later episodic migraine. At times, it felt like I was different from my peers and that my teachers did not understand why I missed school more often than my classmates.
The most impactful event I was involved with was a high school student wellness fair. Some students with headache diseases were open to sharing their experiences with their peers, while others looked through the pamphlets and asked if their symptoms could be indicative of migraine. Many students who already had a diagnosis of a headache disorder were unaware they could qualify for accommodations and were excited to bring new information to their parents and doctors.
Alliance for Headache Disorders Advocacy
Headache on the Hill is an annual advocacy event organized by the Alliance for Headache Disorders Advocacy (AHDA). This event brings together people living with headache diseases, medical professionals, and caregivers to ask members of Congress a specific “ask” to improve care and equitable access for people living with headache diseases.
This will be my 4th year participating. I enjoy the chance to collaborate with people in my state and work together with health professionals, who are mainly headache specialists. It is empowering to share my story, hear the stories of others, and advocate for a common purpose. Headache disorders are so misunderstood and underfunded and I am grateful for the opportunity to share why additional funding is vital. The next Headache on the Hill event is on February 14, 2023.
Miles for Migraine
These events are a great opportunity to meet and connect with others who live with migraine and other headache disorders in your community. In 2023, there will be 24 free in-person events across the US. Check here to see if an event is located nearby you. If an event is not located nearby, you can still participate virtually. I’ve participated in several in-person events, including events where I didn’t know anyone and I left with new friends in a new city. I also enjoyed the virtual events, and through social media found creative ways to post my relaxing photos.
The ACT Now: The Advocacy Connection Team Fellow & Patient Training Program is an advocacy training program for headache fellows and patients. Monthly virtual meetings led by trained speakers are held on various topics including stigma, how to share your story, equity and access, insurance, and the importance of advocacy. I was in the inaugural program in 2020. It was inspiring to be in a virtual room full of numerous advocates with many inspiring ideas on how to improve the lives of those with migraine and decrease stigma in society.
Chronic Migraine Awareness
Advocates Removing Migraine Stigma (ARMS)
ARMS, run by Chronic Migraine Awareness (CMA), encourages volunteers to do what they can, when they can, from wherever they are, to help spread awareness. I have been involved in several ways, including distributing pamphlets, pens, keychains, and more to doctors’ offices and other community centers and by sharing infographics and facts on social media. CMA has a blog where individuals can submit blog posts. I have shared several, including my experience at Headache on the Hill and about ditans when they were first released.
Volunteering with the migraine community has helped me find a renewed sense of hope. The personal benefits I gained include new friendships, improvement in my mental health, less isolation, and increase in professional skills. The experiences I shared are only a few of the many opportunities to get involved in the community. If migraine disease has you feeling alone, lost, or any other emotion, consider getting involved with one of the many migraine and headache organizations.
This blog is sponsored by Lundbeck.
