How Social Media Helps Me with Migraine

Migraine is not what I would call a social illness. In fact, I would describe my migraine disease as quite the opposite. The external view of my migraine disorder is one of solitary pain. I lie on my bed behind a closed door with shades drawn across the windows while the rest of the world moves forward without me. Even as my migraine lies dormant in between episodes, it is invisible to those around me. My mind’s eye is the only one that can see it crouching inside my brain as it waits for the next attack.

According to the American Migraine Foundation, migraine affects 1 out of every 7 people globally. Billions of people are impacted by migraine, yet I know few people burdened with this affliction. Maybe we do know each other, we’re just so accustomed to dealing with the symptoms in solitary confinement that we don’t realize we’re standing next to each other.

Several years ago, I started opening up and talking about migraine at work, with friends, and with family, and I began to find others like me. I decided to keep going. A quick social media search, and I discovered several Facebook migraine groups exist. I joined one of those groups to broaden my knowledge of the illness that has plagued me for decades. I found something more than textbook knowledge.

I found a connection that almost instantly made me feel better, calmer, and less alone. I rarely post anything in my migraine group, but just knowing that understanding and sympathetic people are a mere post away makes me stronger. I suppose it’s the same psychology behind the effectiveness of in-person support groups, only this one is virtual.

Social media is a great place to learn about the practical application of migraine treatments. Do they work as presented in advertisements? What were your side effects? How did treatment fit into your lifestyle? How expensive is the treatment, and is it typically covered by insurance? Even though the strangers on the other side of the cellphone screen may be in pain, they are eager to help a fellow migraine warrior.

I’ve seen other inquiries as well. If you move to a new place and need a doctor who is knowledgeable about migraines and understanding the importance of migraine management, you can reach out through social media and get recommendations from people like you. Many people use the social media group to ask advice on dealing with migraines in the workplace and at home.

There is the occasional post about a well-intentioned friend or family member who let them know they found the “cure” for their headache problem on the internet. These posts lighten the mood and make us roll our eyes together. We are drawn together as we share similar stories with the strangers we call friends.

Reading the social media stories of other migraine warriors is at times heartbreaking. The venting of the real-life struggles of migraine disorder in my Facebook migraine group is sobering. The pouring out of empathy and encouragement in the comments is uplifting. This coming together in support of fellow migraine warriors is a perfect example of what social media should be.

Tap into a community of fellow migraineurs on Facebook. Learn, share, connect in our Migraine Support Community.

Originally published at WebMD.com on 1-30-23.