#MigraineClass

Breaking Down Migraine Stigma to Access Better Care for Teens with Migraine

By Bernadette Gorczyca

A certified educator, Ed.M.

Millions worldwide live a life where their most anticipated moments—family vacations, birthdays, weddings, and more—are frequently overshadowed by an invisible, debilitating, overwhelming force. Millions walking around, not knowing when the next migraine attack will strike. What moment will it steal next? Migraine disease is not an occasional nuisance as it is often portrayed; it is the second most disabling condition worldwide (Steiner et al., 2020). Migraine silently erodes the joy and ability to be fully present in what should be life’s brightest moments, even the small, quiet moments, leaving a trail of missed events, lost opportunities, and unfulfilled potential.

Yet, this widespread struggle remains largely unseen and unaddressed. In fact, fewer than 12% of those living with episodic migraine and just 2% of those with chronic migraine receive the care they desperately need (Dehlin & Starling, 2021). Migraine stigma does more than just block access to care—it stands in the way of living a full, vibrant life.

So, how can we better support teens with migraine? Let’s dive in to explore solutions.

Migraine Stigma, What is it and Where Does it Come From?

According to a peer-reviewed paper, “Stigma and Migraine: Developing Effective Interventions” by Parikh et al., 2021, there are three main types of stigma, each contributing to poor health outcomes:

Public Stigma refers to negative attitudes and stereotypes about a condition that circulates in the general public. Migraine is often stigmatized through negative stereotypes, labeling those who experience attacks as lazy, weak, or neurotic. Media and cultural depictions frequently trivialize migraine, portraying it as a minor, easily treatable issue. This can invalidate the real and disabling nature of the disease.
Structural Stigma occurs when public stigma becomes embedded in policies, laws, and organizational practices. Structural stigma around migraine leads to low levels of research funding, limited access to specialists, inadequate medical education, and poor quality of care. This results in delayed diagnoses and treatments, which worsen the overall disability of people living with migraine.
Internalized Stigma happens when individuals absorb and believe the negative stereotypes about their condition, impacting their self-esteem and causing psychological distress. People with migraine may internalize society’s negative views, leading to lower self-worth and reduced quality of life. Internalized stigma can also worsen chronic pain, contribute to anxiety and depression, and further harm health outcomes.

Each type of stigma can negatively affect both physical and mental well-being. Learning how stigma impacts the migraine community is the first step toward accessing better care and support for teens with migraine (Parikh et al., 2021).

Changing the Narrative Around Caring for Teens with Migraine

Millions of teens in the US are affected by migraine, causing a severe negative impact on their lives. However, when a young person reaches out for much-needed support, they are often met with disbelief, a lack of acknowledgment, or minimization of their symptoms. These repeated reactions can cause feelings of isolation, guilt, and shame, which may prevent teens from further seeking treatment, support, and accommodations.

The stigma creates a barrier to care, but we must treat migraine with the same seriousness as other chronic health conditions. Breaking through societal stigma is the first step in supporting teens living with migraine. We must shift our understanding of the condition to support students living with migraine disease effectively.

The Long-Term Impact of Migraine Stigma on Teen Care

When a teen with migraine goes undiagnosed and untreated, episodic migraine can progress to chronic migraine, leading to a lower quality of life and increased disability. “Migraine can be classified as episodic or chronic. People with episodic migraine have 14 or fewer headache days per month. People with chronic migraine experience more than 15 headache days per month (for three or more months)” (What is Migraine, 2022). This progression can significantly impact a teen’s mental health, academic performance, and overall ability to engage in daily activities. Stigma can further complicate this situation by discouraging teens from seeking help for fear of being dismissed or misunderstood.

Conversely, seeking a proper diagnosis and developing a comprehensive migraine management plan (more on that in another article!) can substantially improve a teen’s symptoms, mental health, and quality of life. Addressing these barriers and providing adequate support can help teens manage their condition more effectively, improve their overall well-being, and prevent disease progression.

Why Migraine Advocacy Matters:

Parents and caregivers play a critical role in advocating for teens with migraine because they provide essential support and guidance. When educated about migraine, caregivers can help teens navigate the healthcare system, ensuring they receive the proper treatment and communicate effectively with healthcare providers. Caregivers can also advocate for school accommodations like extra time for assignments or permission to take breaks during the day.

Timely treatment, lifestyle adjustments, and school accommodations can significantly improve the lives of teens with migraine. Early intervention can prevent the disease from worsening, reducing the frequency and severity of attacks. This leads to fewer missed days from school, sports, and social events, reducing disruption to their lives and education. By being informed, caregivers can help identify triggers, understand symptoms, and create a supportive environment at home and school. This is essential for assisting teens to manage their condition and thrive despite migraine challenges.

How to Provide Better Care for Teens with Migraine

Take Migraine Seriously

- Migraine is a lifelong neurological disorder without a cure. Managing and preventing symptoms is fundamental for improving long-term health outcomes. Believe your teen when they describe their symptoms, provide support, and take their pain seriously.

Learn More About Migraine Disease

- Migraine is much more than head pain alone. Symptoms can include sensitivity to light, smells, and sounds; nausea and gastrointestinal issues; congestion; vision problems; body aches; anxiety and depression; brain fog; cognitive dysfunction; and so much more. Understanding that migraine affects the entire body, not just the head, and recognizing it as a chronic condition that the brain constantly manages is a significant shift in becoming educated about migraine disease. Researching and learning about migraine is critical to becoming an effective advocate for your teen.

Seek a Diagnosis and Migraine Management Plan

- The first step in supporting a teen with migraine is seeking a diagnosis from a neurologist or headache specialist. Work with your neurologist, teen and school to develop a migraine management plan that can include medical treatment, neuromodulation devices like Nerivio, lifestyle modifications, cognitive behavioral therapy, accommodations at school and more.

Conclusion

Addressing migraine stigma is essential for improving the lives of teens who live with this debilitating condition. Recognizing migraine as a serious, chronic neurological disorder—and not just a simple headache—helps dismantle harmful stereotypes and barriers to care. Caregivers can make a profound difference in their teen’s quality of life by taking migraine seriously and advocating for timely diagnosis and comprehensive management.

As we continue to illuminate the complexities of migraine and its impact on daily living, we foster a more informed and compassionate approach to care. With increased awareness and support, we can help teens navigate their journey with migraine, ensuring they have the tools and understanding needed to thrive academically and personally.

Throughout this article series, we’ll explore how to access school accommodations for migraine, build a supportive management plan, and share study strategies for teens with migraine.

Disclaimer:

The information provided in this article reflects personal experiences and should not be considered medical advice. Please consult with your healthcare provider about your personal migraine treatment plan and to see if Nerivio is right for you.

More Articles from my Back-to-School Series with Nerivio:

Author’s Bio:

Bernadette Gorczyca, Ed.M., is a certified educator with over 13 years of experience teaching in public, private, and international schools. Having lived with migraine since childhood and with chronic migraine since high school, she combines her personal and professional insights to advocate for students with migraine. Bernadette offers virtual tutoring services focused on improving academic outcomes and overall well-being for high school and college students managing migraine and other chronic conditions. Don’t miss out on her valuable migraine resources and support, available through her Instagram and TikTok accounts, @ChronicAccounts.

References:

Jill Dehlin, R., & Amaal J. Starling, M. (2021, June 3). The Stigma Associated with Migraine. Neurology Live. https://www.neurologylive.com/view/the-stigma-associated-with-migraine

Parikh, S.K., Kempner, J. & Young, W.B. Stigma and Migraine: Developing Effective Interventions. Curr Pain Headache Rep 25, 75 (2021). https://doi.org/10.1007/s11916-021-00982-z

Steiner, T.J., Stovner, L.J., Jensen, R. et al. Migraine remains second among the world’s causes of disability, and first among young women: findings from GBD2019. J Headache Pain 21, 137 (2020). https://doi.org/10.1186/s10194-020-01208-0