Overcoming the Stigma and Stereotypes of Migraine: An Interview with Rashmi Halker Singh

“For future physicians, if you are looking for an underserved patient population where you can make a big difference and can develop strong connections with your patients, headache medicine is the field you want to enter. There is so much hope and optimism here.” – Rashmi Halker Singh

Rashmi Halker Singh, MD, FAHS, FAAN, is a neurologist and associate professor of neurology at Mayo Clinic in Arizona and is on the board of directors of the American Headache Society. Her interests include chronic daily headache, women and migraine, new and emerging acute and prophylactic treatments for migraine, community outreach and education in migraine, and neurology education.

Here, Halker Singh, who has migraine herself, speaks with freelance writer Kayt Sukel about why she’s so open about living with migraine, the stigma and stereotypes associated with the condition, and much more. This interview has been edited for clarity and length.

What inspired you to go into headache medicine?

While some might think it had to do with my personal experience with migraine, that isn’t the case. I love taking care of people who live with migraine. I love my patient population. I love figuring out what’s going on and how to help them.

Migraine is an invisible disease. As a headache physician, I get to play detective and ask my patients important questions about their experience. By asking those questions, and getting all those details, I have to put together all the pieces to come up with the right diagnosis and treatment plan. I love the fact that my patients and I can work as a team to come up with an effective plan. And I love that this kind of partnership is so important in helping them get on the journey to health.

Rashmi Halker Singh

There really is so much you can do to help someone living with migraine and other headache conditions. I love neurology in general, but there is power in getting to know one disease really well and being able to make a difference in my patients’ lives.

You are not only a neurologist who treats migraine but also a person who lives with it. Why have you been so open about this and how does it impact your ability to help patients?

Migraine is a highly stigmatized condition despite the fact it’s so common. There are so many social implications involved with living with migraine, and I think it’s important for people to see the real face of migraine. It can happen to anyone; it’s not just a certain type of person or certain demographic.

There was a study published in 2020 that looked at how the mass media portrays a person living with migraine. When the authors did a Google search asking what a person with migraine looks like, the search came up with this stereotypical image of a thin white woman who actually has her hands on her head looking really upset. People need to understand that this isn’t the only type of person who is affected by migraine. It can affect Indian women, South Asian people, men, and children. It can even affect physicians.

I talk about living with migraine because I know how important it is to get a well-rounded picture of what this disease really looks like. It will help to destigmatize the condition as well as increase awareness and identification of migraine in others. And I am not only a clinician who has migraine but also the parent of someone who lives with migraine. That, too, is important for people to be aware of so they aren’t always falling back on stereotypes about this disease.

Have you personally experienced migraine-related stigma?

I have not myself, but my daughter has, and it was very eye-opening for me about what it may feel like for patients who live with this disease and don’t have a physician in the family who can speak up for them. When my daughter played club volleyball a few years ago, her migraine disease wasn’t well controlled. So, when she had a migraine attack, she would miss practice. I encouraged her to speak up for herself and advocate for herself when this happened.

Her coaches were aware of her condition. When the season started, we filled out tons of paperwork that included my daughter’s medical history. We filled out all the details of her migraine history so the coaches would have it. I also did my part as a parent and told her that it was her job to communicate to her coaches if she was having a migraine attack and needed a break at practice or had to miss it altogether. We covered all of our bases.

A month or two into the season, my daughter let me know that her coaches wanted to meet with both of us before practice began that day. She had no idea why. I didn’t know what was going on either. When we showed up for this meeting, the coaches put us both in a room and said we needed to talk about my daughter’s absences and started giving me the dates when she missed practice. I was shocked, really. My daughter had migraine attacks on those days and had messaged her coaches to let them know that. She told them about every single missed practice. I had filled out the paperwork at the beginning of the season telling them about her migraine history; it was all documented. We shared everything and they still looked at us as if something wasn’t right.

I was able to explain everything and took the time to talk to them about what migraine is, how it can affect you, how the attacks can be unpredictable, and why no one is going to be playing volleyball in the midst of a severe migraine attack. Ultimately, they were apologetic and understanding. But it showed me how little most people know about migraine and how it can influence how someone is seen. And that’s really what stigma is.

You’ve talked a lot about the importance of new and emerging treatments for migraine. What’s changed from when you first started practicing headache medicine?

When I finished my training about a decade ago, it was a totally different landscape. Typically, to help prevent or reduce migraine attacks, I’d prescribe anti-seizure, blood pressure, or antidepressant medications. While those medicines changed lives for many patients, and I still use them for some patients, they weren’t designed for migraine disease. Many patients are quite skeptical about taking them. And I can understand why. I’ve just diagnosed you with migraine but I’m offering you a blood pressure drug; it’s a mismatch.

Your disease deserves its own research investigations and its own specific set of medications. It wasn’t until 2018 that we finally had disease-specific treatment options available for our patients. CRGP monoclonal antibodies have been groundbreaking. They’ve made such a difference for so many of our patients, especially when other options didn’t work or maybe caused side effects that weren’t well tolerated. It’s been really exciting.

Let’s talk about the greater prevalence of migraine in women compared to men. Why is it important to understand these sex differences?

So we can better help our patients. We know there’s a sex difference in migraine prevalence that really starts to show itself around puberty. About 18% of all women have migraines, and attacks tend to peak around the childbearing years. And about one-third of women who have migraine report there is a hormonal relationship with their attacks. For many women, estrogen levels, and fluctuations in estrogen levels, play a role in migraine. That’s important because we can manipulate those fluctuations to help women by putting them on hormones.

Beyond hormones, it’s also important to think about the stress and societal pressures that so many women face. Those things affect migraine, too.

We’ve learned a lot about migraine from a sex and gender perspective, and how that impacts all aspects of a person’s life. For example, about 20% of women living with migraine share that they make parenting decisions based on this disease. One out of five women has stated that, because of migraine, they might not want to have children. As a physician, I want to help patients so that if they do decide not to have children, it’s not because of migraine. This is especially since many of those same women, from an epidemiological standpoint, would probably be women who would do okay with pregnancy from a migraine standpoint; their migraines might even get better during pregnancy.

It’s so important for all clinicians to be aware of these differences so we can talk to our patients, understand their concerns, and give them the knowledge they need to make the decisions that are right for them.

You’ve been a staunch advocate for increasing the number of fellowship-trained headache specialists. Why?

We don’t have enough. There are only about 700 fellowship-trained, board-certified headache physicians in the United States. When you consider we have about 40 million people, give or take, living with migraine, it’s just not enough.

What do you see as the most common barriers to care in migraine?

First and foremost, a barrier is getting an accurate diagnosis. It’s hard for patients to get in to see someone for recurrent headaches, given the current state of healthcare. Despite the fact that migraine is so common, it’s still under-recognized and poorly understood from a diagnostic standpoint. This is yet another reason why increasing headache and migraine education is so important.

The American Headache Society has created a lot of educational campaigns for both neurologists and primary care physicians. We’re doing our best to help educate our fellow clinicians on this, but for patients to get the help they need, they need the right diagnosis.

What advice about migraine do you have for medical students?

For future physicians, if you are looking for an underserved patient population where you can make a big difference and can develop strong connections with your patients, headache medicine is the field you want to enter. There is so much hope and optimism here. My favorite part of my job is that I get to take care of the whole person, which is exactly why I became a doctor in the first place. This is a great field to be in – and there really is so much we can do for migraine patients. There’s never been a better time to be in headache medicine.

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