Migraine Advocacy: How to Move the Needle for Headache Disorders

A review of an article covering migraine advocacy and how you can get involved

In “What Will it Take to Move the Needle for Headache Disorders? An Advocacy Perspective,” Dr. Robert Shapiro reviews the role stigma plays for those with migraine and other headache disorders. He also comments on the responses of advocacy organizations that work to reduce stigma. Plus, he gives examples of advocacy progress and areas that need your help. Because together, patients, doctors and advocates are as relentless as migraine.

What Will It Take to Move the Needle for Migraine?

Address Stigma

Stigma is the “severe disapproval or rejection of a person due to a trait perceived to indicate deviance from social norms,” writes Dr. Shapiro. In other words, stigma occurs when someone views you in a negative way just because you are different. Migraine is a disease surrounded in stigma. But there isn’t just one cause for this judgement.

Migraine is three times more common in women than men. “Migraine stigma may arise from long-standing misperceptions of women as frail,” writes Dr. Shapiro. While sexism plays a large role in migraine stigma, it is not the only factor.

The words people use to describe minor setbacks or annoyances in life can add to the stigma of migraine. The words “headache” and “migraine” are often associated with things such as traffic instead of being used to describe the disabling medical conditions they are. This has the effect of lessening the true impact of migraine as a neurological disease.

Many people believe those with migraine and other headache disorders fake their pain. This is made worse by the fact that migraine is an invisible disease. That means there may not be any physical signs of pain. Plus, those with migraine may choose to keep their diagnosis to themselves, fearing stigma. The hidden nature of migraine adds too many distrusting and not understanding the disease.

Participate in Advocacy

Migraine advocacy increases awareness for this disease, helping those who don’t understand migraine to see it for what it is: a disabling disease. Speaking out about migraine “is a necessary path to reversing stigma successfully,” writes Dr. Shapiro. Sharing your migraine story with the American Migraine Foundation, a person in your life or on social media using #MoveAgainstMigraine makes your story known, reduces stigma and lets others know that they are not alone..

Another way to participate in migraine advocacy is to share educational resources to fight against commonly believed myths about migraine. Our Resource Library is full of doctor-verified articles that cover a broad range of topics in migraine, making it a great resource to help educate the people in your life about migraine and the impact it has on people and their families.   We have also partnered with many outstanding organizations that serve those with migraine and other headache disorders.

You can find other ways to be an advocate in our advocacy hub where we share updates on how you can get involved. For example, earlier this year we worked with the American Headache Society to get the community involved to encourage the Centers for Medicare & Medicaid Services to cover home use oxygen therapy for the treatment of cluster headache attacks.

Stand Up to Migraine at Work

In his article, Dr. Shapiro highlights an ethical and moral dilemma of how to deal with migraine at work. Lose your job due to too many missed days, or hide migraine and work less productively. Workplaces are like migraine: inconsistent and difficult to predict. Employees with migraine can advocate for themselves at work by discussing ways to reduce their triggers with their Human Resources department.

Workplace migraine programs can provide relief for those living with migraine and benefit company culture and productivity.  The American Migraine Foundation works with the Global Patient Advocacy Coalition (IHS-GPAC) to make workplaces in the U.S. more migraine-friendly by prioritizing patient education and wellness. If you would like your place of employment to be considered for a migraine in the workplace education program, please email us at [email protected] or connect us to your human resources department.

Through addressing stigma, participating in advocacy efforts and standing up to migraine at work, each person with migraine and their support network can take active steps to move the needle forward in migraine advocacy.

Dr. Robert Shapiro is a migraine advocate and professor of neurological sciences at the University of Vermont. Migraine is different for every patient, and finding the right doctor is essential to getting a proper diagnosis and a treatment plan that works for you. Search our online doctor database to find a headache specialist near you, and read more about living with migraine in our resource library.