My Story: ‘I Lived With Undiagnosed Migraine for Most of My Life’

This is part 1 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 2 and part 3.

By the time Gorczyca started middle school, the migraine pain had shifted from her stomach to her head. “I started experiencing more ‘classic’ migraine attacks that would last for days,” she says. Even so, because she was experiencing nasal discharge and swelling along with pain in her sinuses, her pediatrician diagnosed her with chronic sinusitis.

Something felt off about this diagnosis, though — not just to Bernadette, but to her pediatrician. “My doctor would say, ‘It’s so weird. You have all the symptoms of sinusitis but you don’t have a fever,’” Gorczyca recalls.

Once Gorczyca reached high school, she was in near-constant pain, with no sign of improvement. “I knew the word ‘migraine,’ but I had absorbed the stigma that it was ‘just a headache,’” she says.

Her mom continued to worry, though, and took her to see a neurologist. “She understood that what I was experiencing wasn’t normal,” Gorczyca says.

The neurologist gave her yet another diagnosis — tension headaches.

At that time, Bernadette was planning her days around over-the-counter (OTC) pain relievers, taking one about an hour before she needed it to kick in, whether it was for a test or a soccer game. The neurologist was shocked to hear she was taking OTC pain relievers so frequently. But the conversation ended there — she never explained that doing so can cause rebound headaches. “I just kind of understood that I should stop relying on it so much,” she says.

To replace her overuse of OTC pain relievers, her doctor prescribed a preventive medication. After a month of side effects, though, Gorczyca quit the treatment. She still didn’t understand what she was truly facing.

By the time she was 32, Gorczyca was in excruciating pain nearly every day. Her attacks became more severe, and they lasted longer than ever — sometimes 14 days or more.

“It was absolute hell,” she says. “I no longer had a social life because I was always crashing after work.”

To make matters worse, she hid her disease from others. Even one of her closest friends had no idea that she was in constant pain. “I felt guilty,” she says. “I didn’t want to let anyone down.”

On top of that guilt, Gorczyca also didn’t know how to explain what she was feeling. “I didn’t understand it myself, so I couldn’t explain it to other people,” she says. Even her partner had trouble understanding it. “He would be like, ‘How come you can give everything to work but you leave nothing for us at home?’ I was so chronically ill,” she says. “I was disabled but I didn’t understand it.”

She continues: “Pushing through pain was my norm. I did not realize that I was living with a disease.”

At this point, Bernadette was “hanging on by a thread,” but one of the things that kept her going was her work as an English teacher. “Teaching brought me so much joy,” she says. “It helped me exist through the pain.”

One day, a student approached her and said, “I’m having a really bad migraine attack, but I just took a triptan so I should be okay soon.”

Gorczyca recalls asking, “What’s a triptan?” This was the first time she’d heard of this medication, which is often the first line of defense in treating a migraine attack. This student, aware that Bernadette was in constant pain from her own migraine attacks, said, “Ms. G, you need to go back to the neurologist.”

This was the neurologist who finally gave Bernadette the diagnosis she had been searching for since she was 5 years old: chronic migraine.