For Lindsay Ballard, a 28-year-old from Colchester, VT, living with migraine has meant sacrificing things that many people take for granted. Whether missing school, struggling to hold a steady job, or dealing with strains on personal relationships, Lindsay’s battle with chronic migraine has led to feelings of loneliness and isolation.
But rather than withdraw or feel sorry for herself, Lindsay has used the internet to make connections and build new relationships. Through blogs, online groups, and social media, she has found a supportive community who not only share her struggles, but have encouraged and empowered her to share her own experience.
Wrestling with the symptoms of migraine is something Lindsay has been familiar with from an early age. But it was when she became a teenager that the disease began having a major impact on her life. “I started missing a lot of school,” she says. “I spent most of my time playing catch-up because I was sick so often. My peers knew something was wrong, but I never really talked about it, which took a toll on some of my closer relationships. It was hard for me to just be a normal teenager.”
Now, as a student working toward a Master’s in Public Health, as well as Certification as a Health and Wellness Coach, Lindsay is doing her best to manage migraine attacks that have become more frequent and severe than ever before. “I’m completing my degree online, which means I can do coursework whenever I feel well,” she says. “But my condition is chronic and it prevents me from working. I just don’t know when symptoms are going to happen.”
General misunderstanding about migraine, even in professional settings, has made dealing with the disease even harder for Lindsay. During a recent attack before an important family event, she was made to feel like her disease wasn’t all that serious. “I was at the emergency room and because my symptoms are subjective, I didn’t have an emergency [the staff] could see. There was this feeling of ‘we’ll get to you when we can,’” she says. “Those situations remind me of how poorly understood migraine pain really is.”
Lindsay says that the most profound impact of the disease has been on her social life. “It’s always been tough to maintain solid friendships,” she says. “It’s especially hard on my family because I can’t always be dependable. I would try really hard to not let it get me down, but some days it became so tough not to feel isolated from the world.”
It’s this feeling of isolation that led Lindsay to go online in search of information and support. She soon found herself immersed in blogs, online groups, and social media feeds that offered her a whole new opportunity to read and hear about others facing similar struggles. She quickly discovered that sharing her own migraine story and interacting with others debilitated by migraine, provided her with a voice and sense of belonging that she had never experienced.
This virtual support network has vastly improved Lindsay’s sense of wellbeing — and her social life. “I’ve made really great friends who are dealing with similar health struggles,” she says. “There’s a level of understanding and compassion [online] that you don’t necessarily experience with family, let alone the general population. People know exactly what you’re going through and everyone helps support one another. It’s been a real blessing in my life.”
Lindsay hopes that sharing her story can inspire others to take an active role in providing support and spreading awareness about migraine. “Just like any other illness, migraine can be isolating,” she says. “Feeling like people don’t understand your lived experience can interfere with nearly every aspect of your life. I want people to realize that [migraine] can affect a wide age range, any background, any type of person.”
In spite of the many health struggles she faces, Lindsay encourages other people with migraine to be vocal about advocacy and to stay positive. “It’s easy to feel like a victim when you have [migraine], like you can’t do anything. But advocacy work and sharing your story is something you can do,” she says. “Living with this disease has taught me a lot. It’s made me really grateful for my good days and more aware of what’s truly important in life.”
For those living with migraine who feel isolated or are missing out on life moments due to migraine, please know you are not alone. Visit SpeakYourMigraine.com and check out the Migraine Impact Assessment tool, designed to help those living with migraine better communicate the impact of the disease with doctors, coworkers, family and friends.