Stigma has a major negative impact on one’s ability to manage migraine, especially when it comes to mental health.
Living with migraine often means facing misconceptions, and a lack of awareness fuels stigma around the disease. Stigma is defined as negative and often dismissive attitudes experienced by people with a specific medical condition. In the case of migraine, it often takes the form of negative reactions and a lack of understanding when someone is unable to meet certain social, educational or professional expectations because of their migraine symptoms. Stigma can make people with migraine feel invalidated or discouraged, and it can even cause people to second-guess their experiences or believe they are overreacting to their symptoms.
We spoke with Dr. Elizabeth Seng, an Associate Professor of Psychology in the Ferkauf Graduate School of Psychology and an Associate Research Professor of Neurology at Albert Einstein College of Medicine, about a recent study she helped conduct on stigma’s contribution to migraine-related distress, anxiety and depression, and poor quality of life. Read to learn what she and her fellow researchers discovered about the effects of stigma and what people with migraine can do when encountering stigma.
How Stigma Influences Migraine
“The Unique Role of Stigma in Migraine-Related Disability and Quality of Life” study surveyed more than 59,000 people living with migraine. The survey found that about one-third of people with migraine experienced migraine stigma often or very often. The study focused on two types of stigma: enacted and internalized.
“Internalized stigma is when someone with migraine starts to believe some of these migraine stereotypes about themselves,” says Dr. Seng. “So things like, ‘I’m not a very good employee or a parent in part because of my migraine symptoms.’”
On the other hand, enacted stigma is when a person with migraine faces discrimination or negative attitudes from others about their disease. While these two forms of stigma look different, they are very much related to each other.
The vicious cycle between stigma and migraine often plays out like this: a migraine attack occurs, which disrupts a person’s daily life and activities. This can lead to more enacted stigma, which over time becomes an internalized stigma. The additional stress negatively impacts the person’s physical and mental well-being, resulting in more migraine attacks and stigma—and the cycle repeats.
The study concluded that stigma impacts a person’s quality of life, both in how they experience migraine and by contributing to psychological distress. Stigma affects a person’s mental health and well-being by taking the form of increased anxiety and stress—two very common migraine triggers.
Migraine and Socioeconomic Status
The study also highlighted the significantly higher impact stigma has on people from lower socioeconomic backgrounds. Dr. Seng says doctors need to be more aware of how the environment that patients live in can impact their health and access to care.
“It’s important for physicians to understand that [patients from lower socioeconomic backgrounds] are particularly vulnerable to experiencing migraine-related stigma,” says Dr. Seng. “They may have less support in their environment to help them cope and manage and be resilient with migraine-related disability in their daily lives.”
Due to this lack of support and fewer available resources for managing migraine, people from lower socioeconomic backgrounds report experiencing more stigma. But Dr. Seng says this can be changed and that physicians can help.
“We need to be targeting patients in lower socioeconomic circumstances with additional support to help them be resilient as they’re managing this disabling disease.”
How to Fight Migraine Stigma
The link between migraine and stigma is not easily undone, but there are methods people can use to begin breaking the cycle. These include cognitive interventions, a process through which a therapist or doctor helps a person change their thought processes or develop skills to cope with a stigmatized disease.
One technique involves building resilience and skills to help reduce the future impact of stigma. This may include things like interpersonal therapy and self-advocacy education. The study also highlights the importance of a strong community and support network for people living with migraine.
“Experiencing a lot of stigma about migraine in your life… also contributes to migraine-related disability,” says Dr. Elizabeth Seng. “A social environment with less stigma… may be able to help people with migraine be more resilient in the face of significant migraine symptoms.”
This is easier said than done. The stereotypes surrounding migraine often discourage people from sharing their experiences. But remember that migraine affects 1 billion people worldwide—you are not alone in managing migraine. Be honest and open about your experiences. Share your story about how migraine affects your life. Doing so will help you establish resilience and can act as a powerful reminder that you are not defined by migraine.
“By listening to other patients’ stories, getting involved in advocacy, seeking out therapy or talking to their neurologists about those experiences, my hope is that patients can develop a resilient sense of self in the context of migraine,” says Dr. Seng.
Living with migraine means dealing with many misconceptions and misunderstandings about this stigmatized disease. Always remember that you are not alone in living with migraine. There are many resources available to educate yourself and others, as well as a network of other people living with migraine who you can ask for support.
Click here to read the full study.
The American Migraine Foundation is committed to improving the lives of those living with this debilitating disease. For more of the latest news and information on migraine, visit the AMF Resource Library. For help finding a healthcare provider, check out our Find a Doctor tool. Together, we are as relentless as migraine.