Migraine is an “invisible illness,” which means you can look totally fine on the outside while dealing with symptoms that make it nearly impossible to think clearly, see straight, or tolerate light and noise. And despite how often it’s dismissed as “just a headache,” migraine is actually a chronic neurological disease — one that affects how the brain processes pain and sensory information, says Dr. Zarmina Mufti, a neurologist, headache specialist, and migraine educator who regularly shares educational content about living with migraine on social media.
“Unlike tension or sinus headaches, migraine involves real changes in brain function and sensory processing,” Mufti explains. “That’s why symptoms often go far beyond head pain and can include light sensitivity, nausea, and cognitive impairment.” In fact, Mufti reminds us, migraine is the second leading cause of disability worldwide, and the leading cause of disability in women.
Because a migraine is both serious and invisible, it can feel incredibly isolating. When the people around you can’t see your pain or don’t fully understand it, it’s easy to feel alone in your experience. That’s where community comes in. For many people living with migraines, finding others who truly get it can be a turning point — not just for coping, but for feeling empowered.
Here are three ways finding a migraine community can make a real difference.
1. Finding True Understanding Through Shared Experiences
Azra, 29, who has been experiencing migraine headaches combined with epilepsy since she was 11, has joined several Facebook groups focused on migraines and epilepsy where people share their experiences.
“Since I started sharing my experiences [in those communities], sometimes joking, sometimes speaking very seriously, I’ve met so many people who are dealing with migraines themselves or know someone who is,” Azra explains. “It seems like people just don’t often bring it up first, but everyone appreciates hearing experiences from someone who truly understands. For me, feeling less lonely comes from all kinds of places — including random inspirational people online, and unexpected sources of support.”
2. Discovering New Resources
Finding a group of trusted friends to talk to about migraine treatment and experiences has been especially helpful for Kelleigh, 38, who has been experiencing migraines for over a decade. After being a ‘silent sufferer’ for too long and having doctors tell her that her headaches were normal, a friend and fellow migraine sufferer suggested she see a specialist to try and find a better treatment plan.
Finding a doctor who took her symptoms seriously and helped her find the right treatment plan made all the difference.
“It’s weird to say, but when my new doctor told me that my migraines were ‘chronic’ I wanted to cry because no one has ever taken me seriously,” Kelleigh explains. “If it wasn’t for my friend, I would never have taken the initiative to find a specialist and try to get real answers.”
3. Feeling Less Alone
Being a part of an online support group has helped Laura, 50, manage her chronic migraine and feel less alone and even less stigmatized by her own symptoms.
“Just knowing that some of my symptoms are also manifesting in others — although you wish it weren’t the case — does validate that something you thought was super unheard of or bizarre is also happening to others,” Laura explains. “It helps in a way to prevent self-gaslighting of your own symptoms.”
Sharing her own experiences and hearing from others as they navigate their own helps Laura feel less alone, and even feel less shame around her diagnosis.
“Symptoms can be humiliating at times,” she explains. “I find that by helping others, there’s a little bit of peace knowing that any element of my experience might help another person with their own similar struggles.”
Interested In Finding A Migraine Support Group?
There are many to choose from, whether you are looking for an IRL group or one that’s exclusively online.
For in-person meetups and events, check out Miles for Migraine, a non-profit and advocacy group that raises awareness, funds research, and builds community for people with migraine through events like 5k run/walks and support groups. A quick Google search may also help you find local migraine support networks and groups in your area.
For virtual support groups, you can learn more about the American Migraine Foundation’s Move Against Migraine Facebook support group here.
Presented by BDG Studios.
