Kaitlin Hall was a college freshman with a plan: Work hard, earn a PhD in electrical engineering, and become a professor. But about 6 months into her first year at the University of Utah, chronic migraines threatened to ruin everything.
Hall began having up to 20 headache days a month. Some of her migraine attacks were so disabling that she slurred her words and felt numb on her left side. She even fainted a few times.
“There were moments where I was like, ‘I don’t see how I can continue in college like this,’” says Hall, now 25. “For the first year of my degree, I really had no idea what my options were. So I did my best to hide it and work through it, and I didn’t tell anyone.”
When things kept getting worse in her sophomore year, she realized she needed to speak up. But it wasn’t an easy decision. Many people with migraine are reluctant to advocate for themselves at school, work, or home. That's partly because the condition is widely misunderstood and surrounded by stigma.
Hall confided in her research lab professor, who encouraged her to talk to the university’s disability services office and ask for accommodations. “You deserve to be successful,” the professor told her. “This allows us to be fair to you.”
But a couple of powerful emotions kept her from speaking to the disability office right away.
“There was a certain amount of pridefulness on my part,” she says. She remembers thinking: “I’m just fine on my own. I am not a disabled person.”
Fear played a role, too. Hall’s neurologist had advised her not to tell anyone about her chronic migraine diagnosis if she wanted to meet her goal of earning a PhD someday. She says that in his experience as a former PhD student, academic programs had a boot camp-like attitude along the lines of: “If you can’t handle the physical demands of this program, you need to do something else.”
“And so for a long time I was absolutely terrified of, ‘Oh my God, if I tell someone they could throw me out of the program,’” Hall says.
Her courage won out. She told the college’s disability services office she had chronic migraine, and the office decided she was eligible for accommodations under the Americans with Disabilities Act (ADA).
The accommodations were a game-changer. Flexible assignment deadlines gave her more time to receive and recover from her migraine treatments, which she got regularly via shot and IV. More time on exams helped to make up for the pain that sometimes struck while she took tests or studied.
Most of Hall’s professors were supportive when she told them what accommodations she needed. In the rare instance that a professor pushed back, Hall or the disability services office would help them understand her rights under the ADA.
“I think the single most important thing that enabled me to be successful was having good working relationships with professors,” she says.
The accommodations gave Hall a path forward to complete her undergrad degree. And she kept advocating for herself while choosing a graduate school program.
“When I was interviewing with different faculty at different universities, I was very upfront about, ‘This is the challenge I face. ... We need to accommodate it. And here are the concrete ways we can do that,’” she says.
Today, Hall is a PhD student and research assistant at the University of Colorado Boulder.
“Yes, the stigma exists, and yes, there are challenges within whatever system you’re working in, whether it’s academia or your job,” she says. “But there are so many people who are on your side. You just have to let them know how to help you.”
A Mom Who Spoke Up for Herself at Home
Today, Nancy Harris Bonk is chief operating officer of the nonprofit Chronic Migraine Awareness Inc. But back in 1996, she was a stay-at-home mom who was getting up to 28 migraine headaches per month. She was in pain, exhausted, and gripped by brain fog -- all while raising two young children.
“I would use all my energy to do what I had to do for them. Then when they were in school, I would get back in bed or on the couch, and gear up for when they would come home,” says Harris Bonk, who lives in Albany, NY. “I was basically doing the bare minimum.”
Her then-husband was supportive, she says. But as a salesman, he was on the road a lot. So Harris Bonk asked a trusted friend for occasional help with the kids. The friend lent a hand with laundry, food prep, errands, and carpooling the children to activities.
Harris Bonk also explained her health to her young daughter and son, speaking in terms they could understand. She told them: “It’s not that I don’t want to spend time with you or do activities or go to events. It’s that I physically can’t. I will do everything I can to be supportive of you.’”
As her kids grew older, she discussed chronic migraine with them in more detail. They responded by pitching in more at home. As teens, they helped her keep up with tasks like laundry, yard work, and cooking.
“Having a good support network at home means everything when you’re living with chronic migraines,” Harris Bonk says. “To get that support, you have to be very open with your partner, family members, or your caregiver if you have one. Encourage them to learn about migraines, and bring them to one of your doctor appointments if you can.”
When Harris Bonk’s ex-husband joined her at a doctor visit years ago, it helped open his eyes.
“The doctor looked at us both and said, ‘This is a grave situation. We have to do whatever we can to help get you more functional,’" she says.
"And I remember the look on my ex-husband’s face -- it was like, ‘Oh!’ That really cemented things for him.”
Speaking Up for Yourself at Work
Explaining chronic migraines to your employer could improve your experience and help you stay productive, says Cynthia E. Armand, MD, an assistant professor of neurology at Albert Einstein College of Medicine.
Before you talk to your boss, you might want to check whether you’re eligible for benefits under the Family and Medical Leave Act (FMLA). It provides up to 12 weeks of unpaid leave per year.
“It is a great way for patients living with migraines to communicate their condition to employers, account for possible missed days of work (and) time needed for treatment and recovery, as well as ask for certain accommodations,” says Armand, a member of the American Headache Society.
Some examples of workplace accommodations you could request are dimmed lighting, computer screen filters, or a private office space if one is available, she says.
If you don’t speak up for yourself or you downplay your symptoms at work, be aware of the possible drawbacks. Armand says that those can include less productivity, strained relationships with your boss or co-workers, and possibly pay cuts or missed promotions.
Why It’s So Important to Advocate for Yourself
Speaking up about chronic migraines can help important people in your life understand what you’re going through, Armand says.
For instance, being open with loved ones could pave the way for a discussion about how they can be involved in your care, she says.
“Help from family members can be a gratifying experience," she says. "It can deepen their understanding of your experience and strengthen your connection.”
Educating other people about migraines can also reduce the stigma surrounding the condition.
“Those living with migraines are often stereotyped and misunderstood,” Armand says. “Their symptoms are not taken seriously, especially because there often isn't a physical representation of what they are experiencing. They do not carry a cane or need a wheelchair to get around.”
Studying up on the condition could help you can explain it better to others. Armand recommends the resources on the American Migraine Foundation website.
“When you’re talking with someone about chronic migraines, let them know that it’s much more than a headache,” she says. “It is a disease, very much like diabetes, that involves ongoing management in order to maintain a normal level of functioning.”
Photo Credit: AJ_Watt / Getty Images
Kaitlin Hall, PhD student, Boulder, CO.
Nancy Harris Bonk, chief operating officer, Chronic Migraine Awareness Inc., Albany, NY.
Cynthia E. Armand, MD, assistant professor of neurology, Albert Einstein College of Medicine, Bronx, NY.
American Migraine Foundation: “The True Pain of Migraine Misconceptions.”