When Sarah was just five years old, her life was forever changed. “I had my first migraine attack when I was five. I remember I was at my cousin’s baseball game and by the time we made it to the post-game ice cream celebration, I had thrown up three times from the crashing head pain,” she recalls.
At the time, Sarah’s family suspected it was migraine since her mother and grandmother also lived with the disease. But what she couldn’t have imagined then was just how deeply migraine would affect every stage of her life.
And she’s not alone – more than 40 million people in the U.S. live with migraine disease, which can severely impact people’s daily function and personal life in different ways.
“For too long, migraine has been downplayed and stigmatized, but in fact it is a complex and potentially progressive neurological disease,” explains Dr. Dawn Buse, clinical professor of neurology who conducts research on migraine, pain, and the impact of living with chronic diseases. “Stigma persists in and out of the medical care setting, which can fuel the under recognition of disease impact and preclude proper care.”
Together, Sarah’s lived experience and Dr. Buse’s perspective as a migraine researcher illuminate the urgent need to raise the bar for migraine care.
Migraine’s Hidden Impact: Misunderstood and Stigmatized
Over the years, Sarah’s migraine attacks became more frequent and disruptive. The disease began to shape her daily decisions and limit what she could do. “Migraine has affected every phase of my life and the quality of it. As I got older, my attacks progressively worsened and I’ve been riding this roller coaster of symptoms.”
Despite the severity of her migraine attacks, Sarah has often found herself needing to explain, and sometimes defend, the seriousness of her condition. “I think the biggest misconception is that migraine is the same for everyone,” she says. “Migraine is a spectrum disease, and it affects everyone differently. I believe the misunderstanding, under-recognition, and stigmatization of migraine has been very damaging to the migraine community.”
Stigma, as Dr. Buse points out, is not just a social issue: it also contributes to major gaps in care. “People are often inadequately supported in their migraine journey, which can cause confusion at every step of their journey. Many don’t seek medical care, and of those who do, only a fraction receive accurate diagnoses, appropriate medication and non-medication treatment options, and appropriate preventive options for those people who are candidates.” The result is that too many people continue to live with untreated or undertreated migraine, despite the availability of treatment options specifically for migraine including preventive treatments which can help stop attacks from occurring in the first place. This can create risk for disease progression with increasing frequency, severity and impact on quality of life.
Eventually, the constant struggle to manage migraine forced Sarah to step back from the teaching career that she loved. “The work environment and stressors were just way too much for me. I was giving way more to my students than I was giving to myself. My principal told me I had to come to work because it was ‘just a headache’. This is when I knew stigma needed to be addressed.”
Sarah’s story reflects a shared experience and reality among many people living with migraine disease. “Migraine can steadily increase from an attack every now and then to multiple attacks a month, weekly or even daily that severely impact daily function if not properly treated,” said Dr. Buse. “This severe impact can cause people to miss out on major life events like milestone birthdays or graduations, or even delay their careers or having children.” The impact, she notes, is not only immediate but can have lasting effects on the person including their career, finances and their relationships across a lifetime.
Learning to Advocate and Expect More
Sarah recognized that it was time to demand more and soon discovered two powerful tools to improve her care: community and advocacy. Becoming more knowledgeable about migraine disease helped her push past the idea that migraine had to define her limits. “I started believing that better was possible when I started leaning into migraine advocacy. I joined migraine patient organizations and became part of the community. Feeling more understood and educating myself really prepared me to ask for the better care that I now knew existed, and that I deserved.”
Part of that growth came from changing the way she interacted with her healthcare providers, which she began to approach as a partnership. “The biggest thing that I want my healthcare team to remember is that no one knows my body better than I do. It really is a team effort. I want them to listen to me when I share the impact that migraine has on my daily life and my personal care goals. And I want to listen to them so that we can determine a well-rounded treatment approach that considers my goals and the latest advances in migraine care.”
That type of collaboration is exactly what Dr. Buse encourages for those living with migraine. “The American Headache Society consensus statement recommends offering preventive treatment for people with migraine with four or more headache days per month and some disability, or even three monthly headache days with severe disability, yet the majority of people who meet these criteria are not using any preventive treatment. If you haven’t checked in with your doctor recently about migraine or headaches or have never truly shared how it’s impacting you—it’s time. Speak up now.”
For Dr. Buse, better communication around disease impact, severity and individualized goals can be the bridge between guidelines and positive real-world outcomes. “Ultimately, getting the best migraine care is about more than reducing the number of attacks. It’s about helping to empower people to be present for all of life’s ups and downs. Big and small. School, work, family, friends, joy. All of it. On your own terms.” 
Raising the Bar for Migraine Care
Today, Sarah is hopeful about her journey with migraine and wants to inspire that hope in others as she now advocates for the community in various ways, including her online community. “I urge other people living with migraine to not settle for a treatment option that isn’t working. I know so many are doing their best to manage this disease but so many obstacles to quality care still exist.” With treatments specifically for migraine, new standards of care, better awareness, and the potential for stronger patient-provider partnerships, better care is not just possible, it’s necessary.
Sarah’s determination is echoed by Dr. Buse’s view on the path forward: “Better care can result from better conversations—patients and providers working together to define individualized goals and strive for continued progress toward those goals. Even if you feel like you’ve done everything you can, I encourage you to speak up if migraine still impacts your daily life. Talk to your doctor about migraine-specific treatment options targeted toward what ‘good’ looks like for you. Migraine care has come a long way and there is ongoing research and exploration.”
To spark a new conversation about migraine, Sarah and Dr. Buse are lending their voices to the Raise the Bar for Migraine Care initiative, a collaboration between migraine advocacy organizations and Lundbeck. Learn more about the Raise the Bar initiative and access the Patient Empowerment Guide with curated resources to help support the path to better days on Lundbeck.com.
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