Connecting with someone going through a similar experience can bring great comfort when managing a chronic condition like migraine. And the internet can help expand the likelihood of finding the perfect community.
According to WEGO Health’s behavioral intent study, 91 percent of participants said online communities play a role in decisions they make about their health.
Specifically, they turn to social media to post about their personal health experience or interact with someone about their own experiences. Participants also turn to the internet to gather information, read reviews, and share reviews.
Results from the study showed that Facebook was the most popular platform for engaging about health — 87 percent of participants said they share health info via Facebook posts, while 81 percent said they share health info via Facebook messaging.
According to a study published in Surgery, when a group of surgeons created a Facebook group for people with a history of liver transplant, 95 percent reported it had a positive impact on their care.
Sarah Rathsack, who has lived with chronic migraine for more than a decade, can relate.
While she blogs about her experience at My Migraine Life, she says social media also allows for the opportunity to make connections.
“I have my own support in person, but rely on a community of people who I know feel what I feel. My blog brings comments and motivates me to share my stories because it helps others relate and tell theirs. I join Facebook groups, follow hashtags I relate to, and follow other migraine warriors,” Rathsack says.
Mike Canadic made it his mission to use social media as an avenue to connect people living with migraine when he launched his blog Migraine Professional.
“I have founded the Migraine Professional community on Facebook, Instagram, Pinterest, and through the blog, and that has been my main source for inspiration from all of the incredible migraine warriors working every day to better their brains and bodies,” says Canadic.
While Olivia Rehberger, who has lived with migraine headaches for many years, has participated in several online support groups, she says many can be counterproductive.
She started the blog Invisibly Enhanced to create a positive place for the migraine community.
Her latest endeavor involves embracing the free Migraine Healthline app, which she says exudes an inspiring vibe.
“[It] doesn’t feel like ‘whose scar is worse?’ It’s just a positive and constructive community that just gets it. I don’t feel like I have to be anything other than honest there about how I’m feeling. Not to complain, but to feel like I’m not alone in this,” Rehberger says.
Designed for people living with migraine, the app includes features such as daily group discussions led by a Migraine Guide.
- alternative therapies
- managing migraine at school and work
- mental health
- family life
- social life
- navigating healthcare
- prodrome and postdrome
- so much more
Rehberger says having discussions in the app creates a safe space unique to other channels.
“[The app creates] a little pocket of support for people in search of that sense of support and community. Migraine makes maintaining a social life difficult and this app kind of takes the pressure off. When I don’t want to go on Instagram or [other] social media, I’m usually on Healthline sharing things that would be harder for me to put on [other] social media,” she says.
Canadic agrees, noting that the Migraine app sets itself apart from social media channels.
“I like the Healthline Migraine community because it feels like our own separate community apart from all the social media. It’s safe, fresh, and new so I feel like I can share whatever is on my mind and tune into the thoughts and experiences of everyone on there for more ideas, tips, and tricks,” he says.
He looks most forward to the live discussions with guides and influencers.
“[They are] there to encourage and inspire us with their successes and failures. It’s a great way for us to connect and bring the community together with the wealth of information and experience each and every one of us has,” Canadic says.
Rathsack enjoys the group discussions, too.
“I already have related to many on the different issues and categories of need,” she says. “Migraine Healthline has given more of a privacy vibe with notifications that remind me and notify me of friends, chats, and information available. The app gives another opportunity to give power to a person living with migraine. It’s a place to learn and relate to many that know what you are going through. Listening and following others’ journey gives direction for my own.”
Getting matched daily with other members based on similarities is Rehberger’s favorite part of the app.
The match feature allows members to find each other by browsing profiles and requesting to match instantly. Once connected, members can begin messaging each other and sharing photos.
“It’s like Bumble for the migraine community,” says Rehberger.
Migraine Healthline also provides a Discover section that allows users to find informative articles reviewed by Healthline medical professionals about topics ranging from diagnosis and triggers, to treatment and mental health, to clinical trials and the latest migraine research.
Additionally, the section includes personal stories and testimonials from those living with migraine.
Download the app here.