Why I Prescribe Advocacy for Migraine

Yes, an old dog can learn new tricks. After 30 years of practice, I have added a new prescription for many of my patients: Rx – migraine advocacy. Here is why it is good for people with migraine. Advocacy is the strongest antidote to self-stigma and self-stigma is a very toxic substance.

Migraine is stigamatized

Let me elaborate. For years and decades, people with disabling migraine suffer endless micro-aggressions from, well, almost everyone. “Can’t you figure out your triggers? Why didn’t you take care of yourself? My friend has migraine and she never misses work. Why don’t you take Tylenol with your Advil, etc., etc.” And periodically there is a disgusting macroaggression. The one I heard most recently from a patient who told me her life had become much more stressful and when I gently asked her what happened: “My daughter told me she thought I was faking it and that my migraine wasn’t that bad.”

Internalizing migraine stigma

Here is another one: “I was told migraine can’t cause disability.” If over years and decades you keep getting these messages (this has various names – enacted stigma, public stigma) inevitably you develop internalized stigma where you accept or worse believe this garbage. In the worst case, a little voice develops inside of you that does the work of all those haters out there. Self-stigma crushes self-esteem and promotes depression and anxiety. For all of you who endure these endless assaults on your character, here is your best treatment – advocacy.

What is advocacy?

Let’s define advocacy: Advocacy is any action that speaks in favor of, recommends, argues for a cause, supports or defends, or pleads on behalf of others.¹ Advocating for something says that the problem is important (your health and well-being is) and that others (not you) have a responsibility – whether it is to stop saying hurtful things or to correct policies and attitudes that are so harmful to many millions of human beings, or just to be aware. And advocacy works to change attitudes and policies. In fact, it is the only thing that does. Here is one little factoid – the strength of an advocacy movement is more important in determining how much NIH funds research than science, epidemiology, or anything else that can be.

Impact of practicing advocacy

With successful advocacy, you change attitudes and policies. *Ok – it is hard to do and takes a long time, but it is the only thing that works. But here is the more important thing: advocacy changes you. If you go out and help others to adjust their bad policies and hurtful attitudes toward people with migraine, you will even more profoundly change your own negative self-talk and other forms of self-stigma. It is like cognitive behavioral therapy (a form of psychotherapy that is effective for migraine) on steroids.

Community and growth from advocacy

And advocacy brings two more essential things to someone who advocates: community and growth. These are two core elements of wellness that are too often sadly diminished in people with severe migraine. Through advocacy, you will meet a community of resilient and interesting people who share your experience and you will help each other out. And you will learn new things, and grow – which is what humans have to do. And you will make a difference and bring more justice into the world.

Prescribing advocacy to my migraine patient

To my patient, disabled by migraine, whose daughter told her there was nothing really wrong with her and she should just start to function normally, I prescribed advocacy. I told her that somewhere out there is her tribe of committed and good people with migraine. I told her that she needed to get online and keep trying out various kinds of advocacy until she found her tribe. I told that her in her case it was an emergency, and she should start the moment she gets home.

Here are some links for you to get started, or take the next step, in migraine advocacy:

Advocacy organizations

• Miles for Migraine: Miles for Migraine offers live patient-participatory events, such as walks/runs and educational support programs, to people with migraine and headache diseases. Their goal? Bring people together to lessen the burden of isolation and stigma.
• Alliance for Headache Disorders Advocacy: The alliance is a coalition of nonprofit organizations whose focus is to change policies negatively affecting people with headache disorders, including migraine disease.
• American Migraine Foundation: The goal of the American Migraine Foundation is to educate, support, and provide resources for the millions of people living with migraine.
• Association of Migraine Disorders: The AMD wants to improve the understanding that migraine is a full body condition with diverse symptoms. The association originated and supports Shades for Migraine, and connects and grows a migraine reserch community.
• CHAMP (Coalition for Headache & Migraine Patients): CHAMP helps those with migraine, cluster headache, and other headache diseases, who are poorly served and stigmatized, wherever they are on their journey.
• Chronic Migraine Awareness: Chronic Migraine Awareness seeks to empower the chronic migraine community by offering support, information, and education so individuals have the resources to advocate for their own health.
• Global Healthy Living Foundation: GHLF advocates for better access to health care at the community, state, and federal levels. It also amplifies education and awareness efforts through social media.
• Headache Relief Guide: Headache doctors created this website to help teens and their families to gain better control of headaches, get appropriate medical care and limit the disability caused by headaches.
• Migraine Research Foundation: This foundation raises money for cutting edge migraine research grants to better understand the causes of migraine, and develop better treatments.
• The Migraine World Summit: The Migraine World summit puts on the largest course in the world for those with chornic headache and migraine disease with the goal of educating and reducing the global burden of migraine.
• National Headache Foundation: The National Headache Foundation is the oldest and largest foundation for patients with headaches that offers education, awareness, advocacy, and research.
• US Pain Foundation: The U.S. Pain Foundation advocates for people with pain by empowering, educating, and connecting people with chronic illnesses that cause pain, as well as their caregivers and providers. Through its’ many programs and services, it improves the quality of life for people with pain by improving outcomes, addressing access and affordability issues, and increasing pain awareness and empathy.