Migraine Related Stigma and its Impact on Patients in Healthcare

Allison Verhaak, PhD

Migraine, a highly prevalent and debilitating neurological disease, is accompanied by significant stigma. The stigma manifests as negative attitudes and discriminatory behaviors from others toward those living with migraine. Patients have frequently reported experiencing stigma from others, which can exacerbate the already substantial burden of the disease. This stigma has been associated with increased headache-related disability, psychological distress, occupational difficulties, and social isolation in patients. In previous research, migraine-related stigma has been constrained by the absence of a dedicated scale specifically designed to measure and understand the stigma.

A recent mixed methods study on migraine-related stigma conducted by lead author Allison Verhaak, PhD, and colleagues, was presented at the 2023 American Headache Society (AHS) Annual Meeting, June 15-18, in Austin, Texas. The study highlighted the importance of creating a migraine-specific stigma scale to represent and understand the stigma-related experiences of individuals with migraine.¹ Among 40 patients with a migraine diagnosis who were recruited from a tertiary headache center, 78% completed the quantitative survey measures, and 45% participated in the focus groups.

Some of the notable themes from the focus groups included differences in stigma experiences based on gender, prominence of internalized stigma in all domains of living, and feeling invalidated by those who do not understand or have migraine. Additional themes recognized in the focus groups were experiences of subtle enacted stigma and the role of concealment in managing anticipated stigma.

In a recent interview with NeurologyLive®, Verhaak, clinical psychologist, Ayer Neuroscience Institute, Hartford Healthcare Headache Center, discussed the findings from the presented study. She talked about how the stigma surrounding migraine affect individuals' mental health and overall well-being. She also spoke about the specific strategies or interventions that have been proven effective in reducing the stigma associated with migraine. In addition, she discussed how the stigma surrounding migraine impact individuals' healthcare seeking behavior, and what can be done to improve the situation.

NeurologyLive®: Can you provide an overview of the current understanding of migraine and the associated stigma?

Allison Verhaak, PhD: Individuals with migraine often experience negative attitudes and unfair treatment from others as a result of migraine and challenges associated with this medical condition. Migraine is often thought of as “just a headache,” and much of the general public do not understand the chronic and often disabling nature of migraine, which contributes to the stigma surrounding it. Stigma and bias can occur at every level of living, including interpersonal (family or friends), occupational (supervisors or colleagues), within healthcare, and at a systemic/structural level, including challenges with obtaining disability benefits. In addition, when an individual starts to believe these negative attitudes and beliefs held by society concerning migraine, this is known as internalized stigma, and can also be very harmful. We know that migraine-related stigma is associated with many negative outcomes, including psychological distress, migraine-related disability, occupational challenges, and social isolation. It is critical to understand how and where migraine-related stigma is occurring, the impact on the individual, and how best to design interventions to target it.

In your research, have you identified any specific demographic groups that experience a higher level of stigma related to migraine?

This is an area of research that is very important, yet understudied. We know that health disparities exist in migraine prevalence, including by race/ethnicity, sex, socioeconomic status, and sexual orientation, as well as disparities in diagnosis and treatment of migraine. These health disparities are likely a reflection of many systemic issues, including racism, mistrust of medical providers, and lack of representation, including within research studies. The intersection of stigmatized identities, including migraine diagnosis, gender, and race/ethnicity, are a critical part of better understanding one’s individual experience, deconstructing differences in migraine-related stigma, and addressing negative outcomes as a result of these intersecting identities and experiences.

What are the potential consequences of stigma on the mental health and well-being of individuals with migraine?

In our research of migraine-related stigma, we found that concealment, or hiding migraine diagnosis and symptoms from others, plays a significant role in the lives of those with migraine. In our research study sample, we found that nearly half (48%) hide migraine symptoms from friends, nearly 40% hide migraine symptoms from family members, and nearly 70% conceal migraine symptoms from coworkers/peers and supervisors/employers. Migraine is already an “invisible disease,” and concealing symptoms from others can lead to further isolation and psychological distress. Many of our research participants spoke about concern for what might happen if others knew about their migraine condition, as well as feeling misunderstood or invalidated by others when they disclosed about having migraine. This can further contribute to self-stigma, or internalized stigma, and can be very harmful.

Are there any effective strategies or interventions that can help reduce the stigma associated with migraine?

Public health educational campaigns are very important to raise awareness and improve knowledge about migraine, and can have a direct impact on the different areas in which individuals experience migraine-related stigma and bias. There are many great organizations (ie, Miles for Migraine) and annual advocacy events (ie., Headache on the Hill) that seek to increase knowledge, decrease stigma, and focus on research funding and legislation to help reduce inequities in migraine. Many of our patients also find it helpful to be a member of support groups (online or otherwise) and organizations related to migraine, to be able to share with others about their experiences and challenges, and to hear from others also living with migraine.

How does the stigma surrounding migraine affect healthcare seeking behavior?

As with other stigmatized conditions, individuals with migraine have often had negative healthcare experiences related to migraine diagnosis and/or treatment, including experiencing invalidation and bias from healthcare professionals. For example, an individual may avoid going to the ER with severe migraine, or avoid speaking with a healthcare provider about symptoms, if they feel they might be labeled as “drug-seeking” or “dramatic.” It is very important to have healthcare professionals who are knowledgeable about migraine, listen to your concerns, advocate on your behalf, and work with you to determine the best migraine treatment plan for you. With over 40 million people living with migraine in the United States, it is important that individuals know they are not alone, and there are healthcare professionals who understand and can help.

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REFERENCES
1. Verhaak A, Starkey B, Bond D, et al. More than Just a Headache: Investigating Migraine related Stigma using a Mixed Methods Approach. Presented at: AHS Annual Meeting, 2023; June 15-18; Austin, TX. P-214.