Emma Larson was 21 years old and studying abroad in Paris when her migraines started to get really bad. About once a week, one would hit hard: her vision would disintegrate, she couldn't speak, and the pain would render her incapacitated and confused.
Back in the States, her concerned mom, Susanna Styron, tried to understand what was happening to her daughter. Styron, who is a filmmaker, fell down a rabbit hole of research and discovered a whole world of people who were suffering from the same painful and mysterious symptoms as Emma. "First, I didn't understand what was happening to Emma, or how horrible and intense the suffering was," Styron says. "Then, I saw that happening to her out in the world, and I wanted to change that for her and for other people."
Instinctively, she decided to interview her daughter and see if she could make a film about migraines. "I realized that most of the world that doesn’t suffer from migraine has no idea really of the breadth and complexity of the condition," Styron says. The result is a documentary, called Out of My Head, which premiered in February of this year. The film covers the complex medical aspects of migraines in a digestible way, with interviews from top headache researchers around the world. But, it also captures the emotional toll that migraines can take on sufferers and their caretakers, including Joan Didion, who has written about the stress of having the condition.
People with migraines are often seen as weak or dramatic, so many sufferers learn to work through their pain. And as it turns out, migraines affect more women than men. But Styron says she wanted viewers to understand that migraines don't make you fragile — in fact, it's quite the opposite. "It's time to bring it out of the closet and change the perception of it," she says.
Styron and her daughter spoke to Refinery29 about the film and the stigma that women with migraines face.
Why do you think people don't understand migraines?
Emma Larson: "Personally, I think a lot of it has to do with sexism. It’s a condition more women than men experience, and then it became associated with women. In the film, there's a man who gets migraines, who said men are dismissive of him and his migraine, because they associate it with their wives. Historically, female pain has been dismissed or used against women. I think that has a lot to do with why it’s not better understood, because I don’t think it’s been given the attention it deserves over time."
Susanna Styron: "Because of that, it’s also been stigmatized. People don’t want to admit it, and it’s almost like a vicious cycle: They don’t talk about it, so it’s not understood. [Migraine is] really done a disservice by the word 'headache,' because that is so metaphorically misused to describe something that's annoying.
"Every time people ask, 'What's your film about' and I say, 'Migraine,' they say, 'Oh, you mean migraine headaches?' Then I say, no, excruciating headache is the most common symptom, but that's not what it's about. It's about a neurological disease that has many other elements to it."
Emma: "There's a way in our culture that invisible illness is treated. Like fibromyalgia and other conditions where the person looks well, but is not. We don’t really believe people when they say they're sick and they don’t look the right way."
I think many migraine sufferers — particularly women — worry that they sound hysterical or dramatic when describing their symptoms, even to a doctor. How can you learn to be your own advocate?
Emma: "It’s funny, because I’m a social worker, so my job is advocating for other people. But I find that social workers are not always great at advocating for themselves. It’s hard for me, and I feel guilty every time I say no or take a sick day — migraine-related or not.
"I often feel like I’m being weak, which know intellectually isn’t true. It's this internalized thing. It's helpful having people in my life like my mother, my partner, friends, sister, who are able to reflect back to me: You deserve to take care of yourself. It just takes practice, but it’s always hard."
Historically, female pain has been dismissed or used against women. I think that has a lot to do with why it’s not better understood, because I don’t think it’s been given the attention it deserves over time.
Susanna: "Emma has said to me before, about going to work with a migraine, 'If it were just the pain, I could function. But if I can't see and I'm puking my guts out, I have no choice.'"
Emma: "It’s easier when [the migraine] gets to that point. Once I’m actually having a migraine, it’s like, Well, I could stay here and puke my guts out in front of me, or I can go home. The thing I struggle with is making room for the self-care that’s required to keep myself from getting sick. I think that is something that a lot of people can relate to.
"There's something about American work culture, too, where we're expected to work ourselves into the ground. Being able to say, No, I can’t do that because if I do that, I’m gonna make myself sick — sometimes drawing those boundaries is harder. If I’m not sick yet, it's like, Well why can’t you do it? Because I don’t want to get sick."
[Migraine is] really done a disservice by the word 'headache,' because that is so metaphorically misused to describe something thats annoying.
In the film, you describe visiting different neurologists and feeling like you were dismissed by some. Why is it important to find a neurologist or doctor who understands you?
Susanna: "There are just over 500 certified headache/migraine specialists in the country, and there are 38 million people who suffer from migraines at least in the US. It’s such a nuanced and individualized disease, that I think it really is important to find a doctor who is completely focused on that, because you could spend your entire medical education and career trying to understand this."
Emma: "Both of the doctors that I’ve had who were migraine specialists have been women who get migraines. For me, there's something about that baseline of empathy that’s powerful. I think a big part of healing is feeling seen. And, you need that from the person who’s treating you, or the person healing you. Feeling like they see you and validate you is really important. And again, not to say doctors who don’t get migraines can’t do that, but that was helpful for me."