When Beverly Coleman first began creating content online, migraine wasn't her focus. Known to her audience as "CurlyBeviie" or "Auntie Bev," the Dallas-based influencer built a following through beauty tutorials, hair care advice, and lifestyle content. But as migraine became a bigger part of her life, she started to share parts of her experience with it, opening the door to a whole new audience.
"I like to have discussions on Instagram Stories because they have a feature where you can ask questions and people can reply and leave their thoughts," Coleman says. "I'll give updates like, 'Hey guys, here's what's going on with my migraines,' or share something I tried that might help someone else."
Those conversations, often casual and spontaneous, have turned into an informal support network for thousands of followers who also live with migraine disease.
"Talking on Instagram Stories has opened up the conversation and gotten people thinking about migraine," she says.
Coleman is one of many people using social media to shed light on an often misunderstood condition. Even though migraine affects about a billion people worldwide, many who've never had a migraine think it's "just a bad headache." In reality, it's a complex neurological disease and one of the 10 most disabling medical conditions in the world.
Social media has become a tool for changing those misperceptions. When influencers like Coleman openly talk about missing events, delaying work, or needing days of rest after an attack, they illustrate how disruptive migraine disease can be.
Turning Personal Experience Into Public Awareness
Isolation can be one of the hardest parts of living with this condition. Migraine attacks often require quiet, dark environments. That means lots of canceled plans. Online communities may help fill in the gap.
Coleman says that's one reason she enjoys discussing migraine openly on her platform.
"I get a lot of DMs from people sharing their experiences or telling me, 'Hey, I tried something that you recommended and it helped,'" she says. "It really makes me happy that people feel comfortable sharing their stories."
These exchanges often turn into collaborative problem-solving. Followers share tips, tools, or doctor recommendations with each other. For people newly diagnosed with migraine disease, those conversations can be particularly valuable.
Social media can challenge misperceptions by putting real stories front and center. When people see creators like Coleman talking about her sensory triggers, medication routines, or recovery days, it moves the migraine conversation away from its stigma and toward understanding.
Meeting People Where They Are
Organizations like the Association of Migraine Disorders (AMD) are also taking notice of the power of social media platforms. By using outlets like Instagram, TikTok, YouTube, or Facebook, they can get the word out about migraine where people are already spending time.
Kristen Tryon, social media specialist for AMD, lives with chronic migraine herself. In her role, she helps create digital content to educate and raise awareness of migraine disease.
One of the initiatives is the Shades for Migraine campaign, which encourages people to post photos of themselves wearing sunglasses to symbolize light sensitivity, one of the most common migraine symptoms.
"People don't realize how complex of a neurological disease migraine is and how many different symptoms and body systems it can affect," says Tryon. "So we want to raise awareness about that for those who don't live with migraines. For those living with migraine, social media can provide visibility, peer support, and a platform to share their experiences. We want them to know they're not alone."
The goal is also to provide everyone quick and easy access to credible facts about the condition.
"There's a world of misinformation out there," Tryon says. "So from that side, we want to provide fact-based, vetted, and trusted information."
Empowering People to Speak Up
Many people with migraine hesitate to talk openly about their condition at work or in social settings, fearing they'll be seen as unreliable or exaggerating their symptoms. Coleman says she too was hesitant at first to be vulnerable about her migraine attacks.
"I'm actually a private person, so I feel like I struggle sometimes with the thought of 'oversharing,'" she says. "I didn't want people to look at me and say, 'Oh, poor Bev.'"
But once she decided to be real about living with migraine, she saw value in the advocacy, education, and connection she had. Now she encourages people with migraines to communicate honestly about their experience.
"I tell people, be open about your migraines so others can understand what you're going through," she says. "Because when you do need to step away, or take a break from life, people will know what's happening."
That kind of transparency can lead to greater empathy and even practical accommodations from others. For example, co-workers might dim office lights, allow remote work during attacks, or provide flexible schedules. These small changes can significantly improve your quality of life.
"When people share their experiences, it helps others approach the condition with more empathy and understanding," says Tryon.
Being Web Wise
The rise of migraine advocacy on social media represents a broader shift in health communication in general. People living with chronic conditions are no longer passive recipients of information. They're active participants in education, storytelling, and community building.
But as the saying goes, with great power comes great responsibility. Tryon says it's important to use common sense when taking in information on social media, especially about a health condition. When it comes to a vulnerable population like those living with a chronic illness, there can be a lot of false advertising and scams.
"When you're in pain and you're desperate to feel better, you'll try anything," she says. "But unfortunately, there's no cure for migraine. So anyone who's out there trying to say, 'I can cure you with this' isn't telling the truth."
Understanding that it's a double-edged sword is the key to using social media well. Coleman has seen the power of its positive side.
"I enjoy having conversations on social media with people about migraines," she says. "It supports them to feel comfortable to share their experiences, or share things they've learned, new information, or new tools."
