My Story: ‘I Found My Voice and Became a Migraine Advocate’

This is part 3 of My Story: Migraine, a series in which we shed light on what it’s really like to live with a chronic illness. Read part 1 here and part 2 here.

After living with undiagnosed migraine for most of her life, Gorczyca finally received the diagnosis that allowed her to take charge of her health. But in coming to terms with chronic migraine, she also had to grapple with her limitations. So after taking a medical leave of absence from her work as an English teacher, Gorczyca decided to start an Instagram account (@chronicaccounts) devoted to her migraine journey.

At first, her account started as a place where she could share what she was going through with her friends, family, and former colleagues. “I felt like I needed to explain what was going on,” she says. She posted about her experiences living with chronic migraine — things like how difficult it was to leave the house to walk her dog or how she managed high-pain days.

In June 2022, Gorczyca resigned from her position, but she realized she could now use her skills as a teacher to educate others about migraine. “I wanted to reach people like me who had been living with migraine and thinking it’s normal,” she says.

Through Instagram, she began reaching other people who had been living with untreated or undiagnosed migraine and were having the same awakening she had two years earlier.

Gorczyca continued posting regularly, and even though she had only 2,000 followers at the time, she soon caught the attention of the actor Sarah Paulson. “She saw one of my posts and started following me,” says Bernadette.

Although Paulson doesn’t have migraine, she was so impressed with Gorczyca that she messaged her directly. “She said she couldn’t believe my mindset — the way I exist in the world with chronic illness,” she says. “She was very kind.”

From there, Bernadette’s following continued to grow. Her content was really resonating with people — especially the posts where she spoke from the heart. “I realized that through expression, you can reach people,” she says. So she just kept going. “I kept being authentic and real, and it just kind of grew from there,” she says.

Today, Gorczyca has nearly 16,000 followers on Instagram. “It has become a place where I can not only reach people who are untreated but also people who are diagnosed and want to learn more to understand themselves better,” she says.

Gorczyca still sees herself as a teacher — but now she educates people about migraine. “I’m just not in a classroom,” she says. In terms of her advocacy, her focus is on breaking migraine stigma, because “it’s so disabling and it’s not acknowledged,” she says. “You feel so unseen and misunderstood.”

She says that a big part of breaking the stigma is using the right language to talk about migraine. “Through teaching English, I realized how impactful words are,” she says. “It was language that finally helped me understand migraine better.”

For example, Gorczyca tries to teach people that migraine is a disease — not an acute event. “The word ‘migraine’ represents the entire disease,” she explains. “An attack isn’t a migraine. Migraine is the disorder and it causes migraine ‘attacks’ or ‘flares.’”

So instead of saying, “I’m having a migraine today,” she stresses the importance of saying that you live with migraine or migraine disease and are having an attack or symptoms. She likens migraine to other chronic conditions, like asthma. “No one says, ‘I’m having an asthma today,’” she says. “You say you’re having an asthma attack, and you live with asthma.”

Language matters, says Bernadette, even beyond how we talk about migraine in our day-to-day lives. “It shapes how you understand what you’re living with — and how other people understand it,” she says. “It becomes a barrier to treatment when people think migraine is this acute thing without a chronic cause.”

By speaking up, she’s also helping people get the treatment they need. “I see myself as someone who can help you understand migraine better so you can advocate for yourself better,” she says. “My goal is to help people become advocates in their own lives — and help their support systems be better advocates, as well.”