Olympian and advocate Aly Raisman has experienced migraines for a long time — but didn’t always have the words to tell others what she was going through. And it was only in the last few years that she finally got the proper diagnosis for her experience.
“I have had migraine for a very long time — and I honestly didn’t get diagnosed with migraine until a couple of years ago,” Raisman told SheKnows. “So I went most of my life without being diagnosed, which meant that I didn’t have the proper treatment.”
She says it was such a relief to get her diagnosis and have access to the information (via her neurologist) that finally explained the headaches, scalp sensitivity, nausea and extreme fatigue she’d always struggled with: “It was so validating for me, because for years I almost like felt worried that people didn’t believe me,” Raisman says. “I felt like Is there something wrong with me. Like why is nobody finding anything?”
And since those confusing and painful days, she says she’s really come to embrace that “knowledge is power” when it comes to navigating life with migraine. That’s how she ended up partnering with migraine medication UBRELVY to not only share her own personal story but also meet with more patients who live with migraines and take the medication to better understand and advocate for their shared experiences with a misunderstood, frequently debilitating and often invisible condition.
“It’s like an invisible disease because people can’t often tell if you’re having a migraine — and if people don’t have migraine, they don’t always understand it,” Raisman says. She also shared how she had just met with a 19-year-old patient named Greg, who told her about the specific stigma he’s encountered as a man who gets migraines.
“He was saying that, for boys and men, there’s such a stigma around migraine and headaches,” Raisman said, noting it touched her because her own brother experiences migraine too. “We talked about how it can be so difficult because our society doesn’t often empower men to ask questions or to feel safe speaking up and say ‘Hey, I’m in pain’ or ‘I’m really having a hard time and I don’t know what’s wrong with me.’ And we don’t always empower men to feel comfortable and safe, continuing to go to the doctor and asking questions. I think that Greg’s story, hopefully, will empower and inspire a lot of men and boys to feel more comfortable talking about their migraine stories — because I think headaches and migraine, there’s sort of a stigma that it’s just a women’s disease. And that’s certainly not true.”
“We talked about how it can be so difficult because our society doesn’t often empower men to ask questions or to feel safe speaking up and say ‘Hey, I’m in pain’ or ‘I’m really having a hard time and I don’t know what’s wrong with me.'”Aly Raisman
Raisman is particularly passionate about making sure people don’t feel reluctant to stand up for themselves and their health — particularly when it comes to protecting themselves from the harm of something like migraine or getting access to non-triggering conditions or the rest and recovery time they need.
“Greg was saying that when he would say to his teachers ‘I can’t come to class today,’ some of his teachers didn’t believe him. Not only is having a migraine awful, but then on top of that to not be believed? It’s terrible. I think raising awareness and helping people to understand whether it’s migraine, whether it’s mental health, whether it’s whatever it is, someone’s going through, it’s important to believe people and to support people.”
She even shares having her own experiences where she didn’t feel like people believed or understood her needs when it came to her migraines — and how she had to navigate those challenges in the spotlight (like, literally).
“One of my triggers of migraine is light. So if I’m doing an interview, like today, we just have like the shades open. We don’t have any artificial lights. But if I’m doing a photo shoot, or I’m speaking on stage, which I often do there’s lights shining on me. And that’s a huge trigger for migraine,” Raisman shares. “And it’s been honestly really difficult for me. I feel like I have to like over-explain myself. Some people are really great about it, but I think other times I worry that the producer or the camera person would be offended that I’m like critiquing their lighting. And that’s not it at all. And so I actually feel this fear that I’m not going to be believed — or, because I’m a woman, it’s like, ‘oh, she’s just being difficult and she cares about the way that she looks.'”
“I feel like I have to like over-explain myself. Some people are really great about it, but I think other times I worry that the producer or the camera person would be offended that I’m like critiquing their lighting. And that’s not it at all.”Aly Raisman
It’s personal and vulnerable sharing a part of your personal health story with people in those instances, Raisman says, and it’s something she’s still working to navigate in her own life. She feels the stigma around migraines and how often people tend to underestimate the pain sufferers experience made it all the more important for her to “learn to speak up with confidence” — particularly because she does feel overwhelmingly supported by people she runs into in her work and life — to inspire people to be more compassionate to others living with migraine (or any other invisible condition.
“I always say I feel like I’m one of the most supported survivors of abuse in the world. People are so supportive of me, and I’m so grateful for that. Even someone like me, who feels so supported, still struggles to speak up,” Raisman says. “So like, imagine somebody else who doesn’t have a support system like I do? Like how hard that must be for them to speak up? There is a huge stigma and problem and I think it’s the same with like mental health. You can’t always tell if someone’s having a panic attack or feeling depressed. But we need to be supportive and help people.”
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