Can Stigma Toward Migraine Be Countered With Advocacy?

Dawn C. Buse, PhD; Robert E. Shapiro, MD, PhD; Katie MacDonald


July 20, 2022

Editorial Collaboration

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This transcript has been edited for clarity.

Dawn C. Buse, PhD: I'm Dawn Buse, a clinical professor of neurology at Albert Einstein College of Medicine, a board member of the American Headache Society, and a licensed psychologist.

Today we're going to talk about the impact of migraine on quality of life. We're also going to briefly talk about stigma as it relates to migraine and touch upon some strategies for remediation.

I'm joined today by two very wise and passionate experts, Katie MacDonald and Dr Robert Shapiro. I'm going to ask Katie to introduce herself first and then we'll pass it over to Bob Shapiro.

Katie MacDonald: Thanks so much. I'm Katie MacDonald. I am the director of operations for Miles for Migraine. I'm also the director of federal policy for the Alliance for Headache Disorders Advocacy. And I'm a person living with chronic migraine.

Robert E. Shapiro, MD, PhD: I'm Bob Shapiro. I'm a professor of neurological sciences at the University of Vermont with a particular specialty and interest in headache disorders and advocacy for these conditions.

Buse: Thank you and welcome to you both. It sounds like we all experience migraine. Is that right? We all dedicate our lives to treating, studying, caring for, and advocating for people with migraine, as well as experience migraines.

As we know, migraine is incredibly prevalent. It's the second most disabling disease on the planet, according to the World Health Organization's Global Burden of Disease Study, conducted just a couple of years ago. We know that migraine can impact all aspects of life, big and small, including daily activities like making dinner for your kids, picking up someone from school. Big activities. Big life decisions. Going to college, staying in college, having a child. All of these things can be impacted by migraine.

Not surprisingly, when you live with a chronic, disabling, and unpredictable attack condition like migraine, it's going to negatively affect quality of life. This is no surprise, but we're going to talk about that a little bit more.

We're also going to talk about stigma. I'm going to give you a quick definition. Stigma is a set of discrediting or devaluing societal attitudes toward a group, and the group of individuals need to have some shared characteristic. That, in this case, would be migraine. That characteristic would deviate from social or biologic norms.

Of course, life with migraine can make it very hard to follow these social norms. What happens is that people in society will develop these attitudes toward someone with this condition whether they've met that individual or not. The unpredictable, disabling nature of migraine really makes it ripe for stigma.

We will talk about two types of stigma. There's enacted stigma — that's when someone in society will look at someone with migraine with certain preconceived notions. And then there's internalized stigma — that's when someone with migraine starts to believe these devaluing ideas: I'm not good enough. I'm not a good worker. I'm not a good colleague. I'm not a good spouse. I'm not a good parent because of migraine.

These are two — and there are more — defined types of stigma. We're going to look at stigma through both of those lenses: the external view and also the view that comes from oneself.

Let me pass this over to Katie to talk about the patient perspective of the impact of migraine and the experience of stigma.

The Impact of Stigma on Quality of Life

MacDonald: Thanks, Dawn. As I mentioned, I am a person who lives with chronic migraine. I have daily migraine attacks. When it comes to stigma, one of the reasons that there's so much stigma toward migraine is that this disease is misunderstood. For me, it's really important when I explain to people about migraine that I try to help them understand that migraine is really an all-encompassing disease. It affects multiple aspects of my physical being, but it also has significant impacts mentally and emotionally.

I'm fortunate in that I am a high-functioning person with migraine, but that doesn't mean that I'm not highly impacted by it every day. I often describe to people that my world feels really small. I have to control my environment, to control how far away from home I go, what my plans look like on a regular basis, and essentially plan for not being in control of what my life is going to look like at any given moment.

I left my career due to chronic migraine. I was fortunate enough that I have since reestablished myself by getting involved in advocacy. I'm really grateful that I'm surrounded by very supportive friends and family. My employer obviously understands, and that reduces my feeling of being stigmatized by others.

Dr Shapiro, I think, is going to talk more about what we understand about stigma in just a minute. For me, the greatest source of stigma that I experience is the internalized stigma.

Buse: So you're hard on yourself.

MacDonald: Exactly.

Buse: Katie, that was an amazing phrase that you used: "I have to plan for not being in control." How incredibly frustrating that must be for anybody to have to plan ahead, to not know when this unpredictable, disabling experience may occur, and then worry about all the ripples of how that may affect the people in your world.

MacDonald: Exactly. It's that you want to be in control. I think that's a normal human feeling, to want to have control over what's happening. It's a lifelong journey to figure out that you have "to plan" to know or accept that you don't have this control.

Buse: Thank you for sharing the perspective of one person living with migraine. It's really powerful and important. Dr Shapiro has been one of the leading forces in research on migraine stigma. Bob, why don't you tell us about what you're finding in the research?

Shapiro: Great. Thank you very much, Dawn. Over the past decade, approximately, there's been increasing attention on stigma toward migraine, with some very striking research results about its pervasiveness and its impacts. For example, people with migraine feel at least as stigmatized as people who have epilepsy. This is kind of a remarkable thing because epilepsy has really been a maligned disorder, with associations with demonic possession, since biblical times. It's hard to find a disease state that could be more stigmatized than that.

There have been some really surprising results from a recent, large population-based survey study called OVERCOME, which included over 60,000 Americans with migraine. Both Dr Buse and I are among several co-investigators on the study, which included multiple questions regarding attitudes toward migraine, both among people who have migraine and among people who don't have migraine.

Again, getting at this issue about enacted stigma, which is expressed by people who have stigmatizing attitudes toward migraine and then people who have migraine, who internalize those attitudes: The OVERCOME study found that about a third of people without migraine often or very often thought that people with migraine used it to avoid commitments or exaggerated their symptoms of migraine as a result of their own unhealthy behaviors. We also found in more recent data that nearly a third of people with migraine often or very often report feeling that others believe that they use migraine for unfair advantage, secondary gain, or that they themselves minimize the impact or the burden of migraine. [Editor's note: Dr Shapiro presented results from this study at the American Headache Society (AHS) Annual Scientific Meeting 2022.]

These stigmatizing attitudes magnify very markedly the disability that people feel with migraine, and they reduce the quality of life. Using a standard set of questions that measure the migraine-specific quality of life, we found that migraine quality of life is worse for those feeling high levels of stigma who have zero to one headache-days per month, more than those who feel no stigma at all and have had headaches every single day.

In other words, stigma diminishes quality of life more than the frequency of headaches, which is really an extraordinary thing because most people equate migraine as a headache problem or headache disorder. We see that the social context of this disease is perhaps even more impactful, more burdensome, than actually experiencing the headache events in some contexts. This is really a dramatic, important, and underappreciated aspect of this disease.

Addressing Stigma With Advocacy

Buse: Bob, thank you for sharing with us just an overview of some of the research that's going on. Obviously, this is a significant problem on a global level as a public health issue and also on a personal level, as Katie told us.

What can we do? What can we do as healthcare professionals? What can we do as people living with migraine? Katie and Bob, you've both been working actively in this space with some great initiatives. Katie, why don't you tell us what you've been doing.

MacDonald: In terms of how to get involved, I really think advocacy is the key. I think advocacy is important both for patients and for providers. It's not uncommon that we hear patients saying, "The doctors need to figure this out. Why isn't my doctor doing more?" There are exponentially more patients living with migraine than there are providers in the field of headache medicine, so I think it needs to be a collaborative effort.

"Advocacy" sometimes is a scary word for people who aren't involved in it every day. People aren't really sure what that means and how you get involved in advocacy. And I'd like to share with people or suggest that advocacy shouldn't be scary. There's a whole spectrum of ways to get engaged. It can mean just sharing some articles. Maybe you read something that resonates with you and you want to share that with your patients, or as a person living with the disease, you share that with others.

It gets to the point where you're willing to tell others that you have this diagnosis yourself. These are ways we break down the stigma, ultimately. It can be getting involved in different events or initiatives. There are programs like Miles for Migraine that have education days, walk/run/relax events, support groups, and meet-up events so you can get together with like-minded individuals.

Buse: Miles for Migraine groups, support groups, they're free for the most part. This is definitely something for providers to check out for their patients, or if you're a person living with migraine, check out the Miles for Migraine website — there are some great initiatives at no cost.

MacDonald: Absolutely. And it's programing both for providers and for patients. Another initiative, Shades for Migraine, comes around each June, during which wearing a pair of sunglasses is a great way to raise awareness. Additionally, we'll talk a little bit more about Headache on the Hill. This is kind of the ultimate advocacy event in our community, where you get involved in driving policy change that can impact so many different people. Maybe Dr Shapiro can share a little bit more about Headache on the Hill and his thoughts.

Shapiro: How do we address maligned, stigmatizing attitudes? It's really a difficult question. Stigma is a very stubborn phenomenon, and there have been a number of strategies that have been proposed. The one that seems to be the most successful is what's called contact. This is where people who have a stigmatized condition have direct interactions with people who carry the stigmatizing attitudes to really diffuse this. It's has been found to be the most effective intervention strategy identified so far, particularly at a grassroots level.

Stigma isn't just between individuals. It gets entrenched in public policy, in institutions, and among employers. It becomes part of the fabric of society as an accepted way to address or misappreciate the way that people experience particular conditions or diseases.

For the past 15 years, we have been employing this contact strategy to effect changes in structural stigma that is embedded in the policies of our federal government. This is through an annual advocacy event that Katie mentioned, called Headache on the Hill.

Headache on the Hill is an event that brings people who are living with migraine, as well as the people who care for them — doctors, family members, or others — to Washington, DC (or more recently, virtually) to advocate directly with the offices of members of Congress to change policy. So, bringing people who have migraine together with people who may have misunderstandings or poor appreciation of the condition or the disease to change their attitudes, to help them become advocates, and to make changes in federal policy.

In our most recent Headache on the Hill event, which was last February, [204] people from 48 states visited just over half of all congressional offices. We've been doing this consecutively year over year and have built up kind of a longitudinal relationship with these offices, which has led to significant impacts. This is across federal agencies, and it's really proven to be the most effective way that's been, so far, identified to actually effect change at a structural level in the federal government. It is this addressing of stigma at a larger level that we find to be helpful.

MacDonald: I got involved in Headache on the Hill for the first time about 7 years ago, and it was literally a life-changing experience for me. I didn't fully understand what advocacy was. I probably had been doing some of it before then, but actually participating in this event and having to share my story about my experience with migraine opened my eyes to what advocacy is all about and how we really can drive change.

For me, getting involved in advocacy was a way to redirect my frustration and anger about living with this disease into something positive, and to do something positive with my time and my experience that, hopefully, will help others.

Buse: Katie and Bob, thank you for sharing about all the great advocacy work that's going on. It's really inspiring, and thank you for all that you both do.

Katie, I really liked hearing your explanation of how participating in Headache on the Hill was life-changing and really inspiring for you. If I put on my psychologist hat, I'm going to call that improving your self-efficacy. It goes back to that powerful quote that you said toward the beginning of our discussion. You have to plan to be out of control. Well, this is a way to take back some control. You're doing something powerful and positive in the world. That's a really exciting aspect of advocacy.

I hope that our listeners have enjoyed this conversation as much as I have. You can see that there are many ways, as healthcare professionals, to get involved in advocacy, and as people living with migraine, you can get involved as well.

We wanted to suggest looking at the websites of a few organizations to explore advocacy further. The Alliance for Headache Disorders Advocacy advocates for equitable policies for people with headache and migraine disorders. The American Headache Society and American Migraine Foundation are the professional and patient organizations with a lot of great information, as well as the National Headache Foundation. Of course, we talked today about Miles for Migraine as an advocacy organization.

We hope you've enjoyed this discussion as much as we have. Thank you.

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