How to Find Fellow Migraine Advocates

The Migraine Strong team share how they found each other and how you can forge relationships with other migraine advocates

Like most of life’s challenges, migraine is best managed with the support of close friends who understand what you’re going through. The three women owners of Migraine Strong, a proud American Migraine Foundation partner, found each other as migraine advocates on private social media groups.

They share how they found each other, how you can find fellow advocates and how you can grow those relationships.

How we found each other

We were all from separate areas of the country. But we were joined by a common goal of wanting to live our best lives in spite of migraine. That camaraderie eventually led to us banding together to help others find the same relief we had found.

Our first baby step into becoming migraine advocates was recognizing the commonality in our approaches and our determined spirit. We each had very different types of migraine and degrees of disability. But we supported each other through some rough times. Then we noticed that we often interacted on the same social media threads offering helpful resources (like those from the AMF) to other people who were struggling. We cheered each other on as we were on similar paths.

Interacting within those groups eventually led to us connecting through direct messaging to further the sense of connection and healing that we all crave. Migraine can be so isolating, but social media can bring people together. For Migraine Strong, it forged close friendships and an entity dedicated to educating, strengthening and inspiring hope in our community.

Here’s how you too can take advantage of online communities to connect with fellow migraine advocates and further your own migraine advocacy journey.

Find like-minded people

Some of us do not have people in our lives we can lean on. Those that do often feel like they can only share so much with them. Online communities, such as the AMF’s Move Against Migraine Facebook Group, can offer a way of reaching out and finding migraine buddies who can help you through the tough times.

Online communities can bring people together and allow them to build relationships with others that are experiencing the same symptoms. There are many migraine communities on Facebook, Twitter and Instagram. Each of these has its own personality and tone, meaning that there’s a place for everyone. These communities serve a valuable purpose. They give people with shared experiences a place to bond and a chance to feel like they are not alone.

Online communities also serve to be a sounding board or checklist to help people organize their thoughts and their care. You are acting as a migraine advocate when you help someone prepare for their scheduled meeting with their headache specialist or helping them find a specialist by letting them know about the AMF’s Find a Doctor tool.

Forge connections at your own pace

If you are new to migraine groups like Move Against Migraine, feel free to “lurk” and just absorb information. The group is very busy and people with migraine crave connection whether they are looking for help, offering support or just venting. If you are timid, take your time finding your social media voice.

Becoming a migraine advocate starts with being more comfortable discussing migraine with people you know as well as with strangers. Wouldn’t you love to have a great way of explaining to people why you are wearing sunglasses indoors or why your migraine glasses may have an unusual tint to them? Before you whip out your migraine relief kit and reach for your precious migraine tools, figure out what you are going to say. Chances are the people you are with know someone who struggles with migraine.  Our “props” can be great conversation starters and very helpful in destroying the stigma that we live with.

Share with friends and family

This can be truly terrifying for many of us. The stigma of migraine being “just a headache” prevents us from telling others about our experience with migraine. Not being believed or being ridiculed for being taken down by “headaches” is something that happens daily to many migraine advocates. Slowly but surely, we can educate others about how migraine is a neurological disease that affects multiple body systems and inspire others living with migraine to do the same.

Sharing your migraine story through AMF helps others see how migraine looks through your eyes and helps them feel connected. At Migraine Strong, we share My Migraine Stories from people who want to be heard so they can help others. We share these stories throughout the year with an emphasis on the month of June as we honor National Migraine and Headache Awareness Month.

Participate in advocacy together

When you do find a group of friends and supporters, there’s nothing like bonding through advocacy. Being a migraine advocate can be as simple as responding to a question about what helps you the most during a migraine attack, or helping someone new to migraine learn the essentials. You can also start a migraine support group with the goal of sharing advocacy ideas.

Or perhaps you would like to shape our healthcare system via legislation in Washington D.C. If that calls to you, Headache on the Hill may be the right avenue. Migraine advocates are also needed to bolster the participation and energy in a growing number of organized events. Miles for Migraine holds many virtual and in-person gatherings including walk-run-relax events for all levels of ability and athleticism. Getting involved with the organization is simple and rewarding. It’s also a great way to spend time with your new friends.

Regardless of where you are on your migraine advocacy journey, online communities can be a great place to find inspiring people and share your own story. Take a few moments to evaluate your journey and decide where you can get involved as a migraine advocate.

The American Migraine Foundation is committed to improving the lives of those living with this debilitating disease. For more of the latest news and information on migraine, visit the AMF Resource Library. For help finding a healthcare provider, check out our Find a Doctor tool. Together, we are as relentless as migraine.