Migraine Self-Advocacy

Dr. Robert Shapiro shares advice for becoming a better advocate for yourself and bringing the disease out of the shadows

Migraine is a debilitating condition that affects over 37 million Americans and their families. It’s a disease in which patients find relief in dark, spaces to alleviate the symptoms that come with exposure to bright lights, noise and conversations. Many people who experience migraine hide their pain and discomfort with those around them, which can be a lonely experience for all.

Dr. Robert Shapiro, a board-certified neurologist and professor of neurological sciences at the University of Vermont, says that it does not help people with migraine to remain quiet about their symptoms and the disease. “It helps promote the idea that this is a condition which few people have,” he says, even though the statistics say anything but. “It’s the hardest thing for patients to actually identify themselves as having this problem, but it’s probably the most important and necessary piece to actually move beyond the stigma.”

Misconceptions of Migraine

In common usage, migraine “is about twice as likely to be used as a metaphor of devaluation or annoyance than it is actually as a physical problem. Migraine ends up being tied to this sense that is not something that’s serious,” Dr. Shapiro says. And that is far from the truth. The best thing you can do to reduce the stigma surrounding this disease is to be vocal.

How to Advocate for Yourself

Practice Self-Care

Take care of yourself, consider your needs and determine what best helps you manage migraine symptoms. Perhaps it is regular mild, low-impact exercise, like yoga, which can reduce stress and help you sleep better at night, or an afternoon of relaxation.

It is also important to take note of your migraine patterns. For example, if you notice that you experience a migraine attack after drinking caffeine, reduce your caffeine intake. Eating regular, nutritious meals may also improve your symptoms, as does drinking a recommended seven to eight glasses of water a day. Treating yourself right, listening to your body and understanding your needs is the best way to be kind to yourself.

Share Your Experience

“People with migraine suffer to a great degree without the support that they need and deserve,” Shapiro says. To combat feelings of loneliness that often come with migraine, it’s important to speak to family and friends about your experience so that they can support you during the good and headache days. Migraine occurs in one in every four households, so there is a good chance that someone you know may also be experiencing the symptoms, too.

You can also turn to advocates in your community or social media for advice in navigating migraine. Groups, such as the Move Against Migraine Facebook Group, can provide community support and helpful information about preventative treatments and doctors and even act as a sounding board.

Find the Right Doctor

Determining the best treatment plan for you comes with finding the right specialist. Before going to your first appointment with a headache specialist, compile a list of questions to ask your doctor, to ensure that nothing goes unanswered. Keep a headache diary where you track your symptoms and the events leading up to the onset of a migraine. Be prepared to speak with your doctor about your medical history, which will inform your treatment plan. If you are silent about your condition, it could even delay your diagnosis, so be sure to address all of your symptoms and concerns. This can put you on the right path to managing migraine.