How to Talk About Migraines So Others Understand

Karamo Brown, Queer Eye reality star, wants to help you start conversations at home and at work.

by Sarah Ellis Health Writer

As the star of Netflix’s hit show Queer Eye, Karamo Brown (pictured above) knows a thing or two about self-love. The Emmy-nominated reality host is known for his colorful bomber jackets, kind demeanor, and innate gift for helping people work through their insecurities and learn to love themselves.

Here’s something you might not know about Brown: He has been living with migraines since he was in high school. Growing up, he dealt with stigma from friends and family who didn’t understand the severity of his condition. “When it comes to migraine, it’s more than a headache,” he says. “It’s debilitating in so many ways.”

Indeed, migraine is a serious and painful condition affecting 12% of the American population. “Migraine is more common than most people realize,” says Susan Hutchinson, M.D., headache specialist at the Orange County Migraine & Headache Center in Irvine, CA. “It affects approximately 18% of women and 6% of men in the U.S. and is highest in people between the ages of 30 and 49.” The impact is more than just physical; it’s emotional as well. “Many patients come to my office saying that migraine has greatly impacted their personal lives, so much so that they’ve lost friends, jobs, opportunities and lots of time due to the disease,” she recalls. “Many people want to be there for their child’s first day of school or a friend’s birthday party, but migraine has kept them in bed.”

Brown understands these challenges personally, and he wants to help. He has begun working with the Know Migraine Mission, a project by the team behind the new migraine medication Aimovig (erenumab), to start conversations about migraine and how it impacts people’s lives.

We spoke with Brown about how he’s navigating these strange times, why he chose to take on this issue, and what he hopes to impart to others through his advocacy work.

We’re obviously living in very stressful times right now, and I wonder if the stress has impacted your migraines at all. How are you feeling these days?

KB: Stress is one of the biggest triggers for my migraines. Thank the universe that 2020 is done—but the residual effects are still here with us in 2021. One of the things [that has helped] me is taking moments to sit in calmness to center myself. When I find myself feeling overwhelmed by the news, the fact that I’m not able to do something that I was able to do before, the fact that I’m not able to make the money I was making before—any of those things that are stressors for all of us—when those things pop in my head, I take a moment, breathe in, breathe out, and think about the positive things that I do have in my life.

It’s a mental trick of changing your thought patterns from negative, fear-based feelings to more positive, love-based feelings. That helps relieve the stress for me. It helps me to calm myself down, and it helps me to ensure that my migraine doesn’t start to get really bad.

What are some of the most common misconceptions about migraine, and why are they harmful?

KB: Until you’ve experienced it, most people don’t understand how debilitating migraine can be. You feel like you can’t focus, you feel nauseated, and you’re trying to express to people what’s going on, but they think you can just take an Aspirin and be over it immediately. You feel isolated and alone because you feel as if no one can understand what you’re experiencing.

The more knowledge people have—and that’s why I’m sharing it—the more people understand that this is not just a headache. When they understand that their family member or friend is really suffering, that’s where the empathy starts to come in.

The Know Migraine Mission is about speaking up and starting conversations. Why is it important that people with migraine open up about their experiences?

KB: Because until we open up about what we’re experiencing, other people will continue to make assumptions about what’s happening to us. Communication is one of the most important tenets of living an emotionally and mentally fulfilling life. The more you can communicate about what you’re feeling and be honest and vulnerable, the more you’re going to have connections with others. The more you’re going to feel as if, “I am not alone in this world,” which many of us sometimes feel.

Did you ever have a time when you felt afraid to talk about your migraines publicly?

KB: Many times. Unfortunately, the places we spend the most time are sometimes the most unsupportive environments. In schools, you’re there to do your work. The bell rings or your alarm goes off, and you go to the next class. Teachers don’t have the time to really support or assist you when you’re having other issues. Same thing for corporate America. Things are changing a little bit, but most jobs don’t offer mental health support.

There were many times when I was in school and when I was working in social services that I would want to talk to someone [about my migraine], and I would try to. But they didn’t understand, and they would make me feel like this wasn’t the place. But what I’ve learned is that if you’re experiencing it, that means it’s okay to share it.

What would you say to someone who is scared to talk about their condition due to fear of repercussions, such as a negative impact at work after telling their boss?

KB: First of all, I want to say that I understand your fear. Our jobs are our livelihood. They are the way we feed ourselves and have a life that we feel comfortable with. So, I acknowledge your fears, and I understand what you’re going through.

But one of the things about fear is that once you start to shed light on it through support and through education, things change. If you can, find one person in your company, whether it be another coworker or someone in the HR department, who can understand what you’re going through. There is power in numbers. It is scary to be that lone voice in any situation, but sometimes collectively, when you have a group of people who are saying, “I don’t experience migraine, but I do understand what my friend or coworker is going through,” that’s when you have the power of everyone working together so you can actually get the support you desire at work.

Do you have any specific suggestions for how people should approach conversations about migraines with people who might not understand the condition?

KB: Make sure you are clear about what you want to express. I always tell people that if you’re going into these conversations, it’s okay to write it down. I think sometimes movies have gotten us confused that we all need to be great at walking in rooms and making these grand speeches where we proclaim who we are and what we’re experiencing, and everyone is going to be enamored by the fact that we were so elegant in our words. That’s not reality.

The reality is that sometimes you feel intimidated in situations, especially if you’re not a big public speaker or if you’re shy. So, writing down exactly what you want to express in bullet points is a great way for you to walk in the room and have exactly what you want to say. Also, be clear about the solution. Educating this person is great and so important, but if you need more support, you have to be able to express that.

Write down the things you want to educate them about and be very clear. Take your piece of paper in and read off the paper. There is nothing to be ashamed of there. It’s a perfectly normal thing, and it allows you to be clear about what you’re saying and what you need.

What has living with migraine helped you learn about yourself?

KB: Having migraine, I learned that I’m stronger than I ever thought. Being able to deal with the debilitating pain that migraine brings and still get up and be able to find joy in life, it makes me happy to know that I have this resiliency in me.

As a parent, there are many times when you look at your child and it’s heartbreaking, where you’re like, “I can’t today because of migraine.” To know that you can get back up the next day, feel empowered, and still tackle the world is such an important message for people to know. Today might be hard, but tomorrow will be better.

Go to KnowMigraineMission.com to join the conversation.

Sarah Ellis
Meet Our Writer
Sarah Ellis

Sarah Ellis is a wellness and culture writer who covers everything from contraceptive access to chronic health conditions to fitness trends. She is originally from Nashville, Tennessee and currently resides in NYC. She has written for Elite Daily, Greatist, mindbodygreen and others. When she’s not writing, Sarah loves distance running, vegan food, and getting the most out of her library card.