Addressing Migraine Stigma through Advocacy: An Interview with William B. Young

“That’s the million-dollar question. To start, we need more studies. With something that will have such an enormous impact on patient care, you need to make investments in studying what is effective in reducing stigma. Unfortunately, there’s not a lot of that going on. The medical community is trying to address it by the seat of their pants. They believe if they give enough lectures or mention stigma enough times, it will be enough to help doctors stop stigmatizing the disease. But the nature of stigma is very strong and profound. You can’t just go up to a doctor and tell them to stop being stigmatizing. It’s a difficult problem to solve. To make progress, we need to learn what really works in effecting behavior changes across the entire field of medicine.” – Dr. William B. Young, on how to make physicians more aware of stigma.

William B. Young, MD, is a professor of neurology at Thomas Jefferson University and a physician at the Jefferson Headache Center. He is also a patient advocate, working closely with Miles for Migraine, and serving as founder and an inaugural board member and president of the Coalition for Headache and Migraine Patients (CHAMP). Young has dedicated his career to promoting a greater understanding of headache disorders, with a particular focus on reducing stigma for those living with migraine. His first article about the subject appeared in 2013, and he recently penned a piece for the journal BRAIN about the long history of migraine stigma, with the goal of illuminating the pervasiveness of stigma, even within the medical community.

In this Migraine Science Collaborative interview, Young speaks with freelance writer Kayt Sukel about the problem of migraine stigma, what needs to happen to improve it, and how his advocacy efforts have changed his clinical work for the better, among other topics. What follows is an edited transcript of their discussion.

What first drew you to headache medicine as a specialty?

I just fell into it 34 years ago. When I finished training, I was looking for a job, and my former chairman suggested three job opportunities. Stephen Silberstein had a headache center at Thomas Jefferson University. I knew, as a neurologist, that I’d have the opportunity to treat more headache patients there, and I liked taking care of them. So I became part of that center and have been there ever since.

In my opinion, migraine and headache disorders are the most exciting areas in neurology. There’s been more growth, understanding, and change in treatment approaches in this area than anywhere else.

Stepping back, I also think the phenomenon of migraine is very interesting from a neurological standpoint. Being able to explain what’s going on with migraine is a worthwhile challenge. I like doing that work, and now I’ve also gotten into patient advocacy and somehow ended up studying migraine stigma, too.

William B. Young

You recently wrote a fascinating article looking at migraine stigma through a historical lens. What is the value of understanding how stigma has evolved over time?

The first issue, which I think, at least from a scientific standpoint has been solved, is that it is important for everyone to understand that migraine stigma exists and affects people negatively. Thirty years ago, people would go to the doctor with a headache, and they wouldn’t realize why they felt so terrible after that interaction with their provider. They would be angry because their symptoms and feelings were belittled and stigmatized in the process. And that stigma followed them outside the examining room. They would experience it in almost every domain of life. Their symptoms would be belittled in the work environment, and they would have to deal with family members who didn’t understand why they couldn’t participate in certain activities. That’s the external stigma, the felt stigma.

But people also experience self-stigma – that’s the worst part. Because, at a certain point, people start to believe that garbage about themselves, and they incorporate these feelings that they are inferior just because they have this disease. It shouldn’t be that way.

Today, we’ve shown that stigma is a part of all chronic diseases. But migraine faces some of the worst stigma. If you look at the work of Rachel Best [a sociologist at the University of Michigan], where she compares stigma across diseases, you find that migraine isn’t quite as stigmatized as mental health conditions, but it’s more stigmatized than any other chronic illness. It’s right up there with gonorrhea, which is an infectious disease.

It’s good that we now recognize, and have confirmed in many different ways, that stigma is a problem and contributes to the burden of migraine. Imagine how hard it must be for someone with migraine, not just to carry around the disease, the symptoms, and the consequences of the disease, but to also have the burden of being stigmatized on top of that. It’s horrible.

What do you hope that medical providers take away from that research as well as your own work on migraine stigma?

Providers should make efforts to recognize the stigmatizing things they say and do. They should then work to be a positive force in reducing stigma.

Unfortunately, we are a long way from getting there. Headache medicine providers, who are trained to understand headache, are better at recognizing the stigma. That is an accomplishment, because I think it’s taken the last 10 years to get to that point. But that understanding has not yet reached the general neurologist, the family doctor, the internist, or other physicians who people living with migraine may see first. There hasn’t really been much of an effort to address stigma, or even help these doctors be aware of the problem, across most of the community. We have a long way to go.

What can we do to make physicians more aware of stigma so they stop stigmatizing their patients?

That’s the million-dollar question. To start, we need more studies. With something that will have such an enormous impact on patient care, you need to make investments in studying what is effective in reducing stigma. Unfortunately, there’s not a lot of that going on. The medical community is trying to address it by the seat of their pants. They believe if they give enough lectures or mention stigma enough times, it will be enough to help doctors stop stigmatizing the disease. But the nature of stigma is very strong and profound. You can’t just go up to a doctor and tell them to stop being stigmatizing. It’s a difficult problem to solve. To make progress, we need to learn what really works in effecting behavior changes across the entire field of medicine.

One of the things that is really interesting about migraine stigma is how rich the social context of it is. I often think about how much we could gain in our understanding of it if we could involve more social scientists. They would give us another way to think about this disease. Some of my most fruitful collaborations have been with sociologists, because they know the most about stigma, but most work in areas like Alzheimer’s or degenerative diseases. I wish more would take an interest in migraine.

Tell me about your advocacy work.

I had very rudimentary discussions about the need for advocacy early on. I noticed that the National Institutes of Health [NIH] was not providing research dollars in proportion to the burden of illness when it comes to migraine. That’s led to a real neglect of research into migraine. I wrote a poster about it for a meeting, and a colleague of mine, who had started an organization called the Alliance for Headache Disorders Advocacy, reached out. I wanted to do more advocacy work, so he arranged to send me to an advocacy training program sponsored by the [American] Academy of Neurology.

Lo and behold, I went through the course, was certified as a graduate in advocacy, and became vice president of an organization that was working to effect change in policy; in those days, we only thought about that piece of the advocacy pie. We wanted to work on policies that negatively affected people living with migraine, including the NIH policy that limited how much funding the disease should be getting.

At the time, we were only getting about one-twentieth of what we should be getting, funding wise, if you based the amount on the burden of the illness. We were getting $10 million when we should have been getting $200 million.

That’s where I started my advocacy journey, but over time I realized that we needed more patient involvement. I’d see many thousands of people attending a fundraising walk for Alzheimer’s disease. But when we brought a walk to Philadelphia for Miles for Migraine, we maybe had 60 people the first year. Having patients involved is important to the perception that the disease you are representing is worth advocating for. I started to understand that we needed more patient involvement so we could effect change. And last year we had a record 1,000 registrations at our walk. That’s a huge difference compared to before. But the burden of illness for migraine is 1% to 2% higher than for Alzheimer’s, and they can get many, many thousands of people to walk. In some ways, it’s another manifestation of the stigma associated with this disease.

What prompted you to found the Coalition for Headache and Migraine Patients (CHAMP)?

I read a famous book called The Emperor of All Maladies [by oncologist Siddhartha Mukherjee], and about a quarter of it is about the cancer advocacy movement. The author made the argument that those advocacy efforts really took off when patients muscled advocacy away from doctors, or at least had control of advocacy. If you think of AIDS, if you think of autism, or other diseases, successful advocacy has come from a grassroots effort from patients and families. It’s not really the doctors who are providing the force behind those efforts. It’s the voices of patients and those who are most affected by the disease.

It struck me that relying on doctors to be the leaders and provide the energy of an advocacy movement was not the right way to make fundamental change, which is what we need to do for migraine. So Miles for Migraine is very much for patients by patients. They need doctors to help them understand the research and treatment landscape – which is what someone like me can contribute – but the rest needs to be driven by patients.

The same goes for CHAMP. To be in the coalition, you have to be a patient organization. We do have a few organizations that are a mixed group of patients and doctors, but we remind them when they join that they are speaking for the patients.

Obviously, there are places where patient-led and physician-led organizations have the same mission. The physician-led organizations call for more headache doctors, for more funding, and patients can certainly get behind that. But there are other areas where we need to be guided by the patient voice. And CHAMP brings together large blocks of people to use those voices and their reach to make progress. The different organizations in the coalition can work together to map out how we move forward, without stepping on each other’s toes or duplicating each other’s efforts. Because with migraine there are plenty of things we can do to reduce stigma and help people who live with this disease lead better-quality lives. We need to all work together to move the needle.

How has your work in advocacy and understanding stigma changed the way you work with your patients?

I think it gives me a kind of superpower in my interactions with them. I’ve now learned to see the stigma and how it has affected a patient. And when you can recognize it, you can take some of it away; you can help that patient shed at least some of that burden. And honestly, you will probably be the first provider they’ve seen who has ever tried [to help in that way]. Patients really appreciate that. It increases your credibility as a provider, as well as the patient’s emotional buy-in for treatment recommendations. The knowledge I’ve gained makes me a more effective provider because I can see what so many other doctors don’t.

That’s why I recommend that both providers and patients join advocacy organizations like the American Headache Society and the National Headache Foundation. Advocacy is part of their mission. When you join and start to consider how to think about issues like stigma in a smart way, as a provider working directly with patients, you will bring it into your clinical interactions and your office’s approach to your patients.

Kayt Sukel is a freelance writer based outside of Houston, Texas.

Image credit: 123RF Stock Photo.