According to the Migraine Research Foundation, migraine is a disease that’s three times more likely to occur in women than men, and has long been branded a “woman’s disease.” Rick Schulze, a 56-year-old professor of health science at Lock Haven University in Pennsylvania, spent decades enduring the shame and isolation of living with a disease anchored by that false stereotype. But today, he is using his voice to shatter misperceptions, and to empower others with migraine — particularly men — to seek help without shame.
Rick’s perceptions of his disease were formed at a very young age, during a time when there was little understanding of migraine as a legitimate neurological condition that affects both women and men. “I had my first migraine in second grade,” he says. “When people thought of migraine in the sixties and seventies, they tended to imagine a typical suburban white woman with a lot of stress. It (migraine) was often associated with a sense of frailty. I didn’t know any men with migraines — or at least any that openly talked about it.”
These perceptions of migraine — and the people living with the disease — stuck with Rick throughout adolescence and into early adulthood. Ashamed of his illness, he avoided discussing it with others, which led to feelings of isolation. It wasn’t until college that Rick discovered other men were also silently wrestling with the disease. “I met a couple other guys who had migraine,” he says. “Up until that point, my mother and a few women in our neighborhood were the only people I knew who lived with migraine. It (meeting others) was eye opening for me.”
Although these connections brought Rick a new understanding of migraine, he continued to face challenges due to these stereotypes, which even impacted his professional life. “In my early career as a professor, I went through about a semester where I was having a migraine every day,” he says. “A month into the semester they were so bad I had to cancel classes. I had a very negative experience with the chair of my department. He simply didn’t believe that I was experiencing migraine, because he couldn’t see it.”
The challenges didn’t stop there. Rick’s personal life was also affected. “Over the years, many of the people I was dating didn’t believe that I had migraine,” he says. “I would have to cancel plans at the last minute because I didn’t feel well and they would often dismiss it, like I was making up my symptoms.”
Through experiences like these, Rick came to the realization that educating himself about the disease would empower him to shake off his shame and become an advocate for his own condition and for others. “I found a regional headache center and it was one of the best actions I’ve ever taken,” he says. “The nurses and physicians there really understood what I was going through.” The community he found also helped Rick find a new level of comfort with his disease. “It made me realize there were so many other men who spent years staying silent,” he says.
Today, Rick is more vocal than ever about his condition, particularly when it comes to empowering men who may feel shame about the disease. “Many men tend to internalize their feelings about whether they should ask for help,” he says. “I often share my illness with students in the classes I’m teaching. More and more, male students will raise their hand and say, ‘I’ve had migraines too. They run in my family.’ It’s encouraging, and shows me that awareness and openness around the disease is changing.”
Rick urges men living with migraine to become advocates for their own wellbeing. “It’s important to take an active role in your health,” he says. “The more you know, the more comfortable you’ll be in discussing misperceptions. The resources are out there — get informed and use your voice to educate others.”
For more information about migraine, visit SpeakYourMigraine.com.