STRENGTH IN EVERY STORY™
Strength Behind an Invisible Disease
Ronetta’s Story, July 2024
*As told by: Katy Oakley
Diagnosis received: Chronic daily intractable migraine with and without aura
Symptoms: Sensitivity to light, Sensitivity to sound, Sensitivity to smell
Ronetta, a 51-year-old woman living in Connecticut, has been navigating the challenges of migraine disease for over two decades. Her journey began in high school when she experienced her first migraine attack, though it wasn’t until after college that she received a formal diagnosis. “I wasn’t diagnosed until after high school,” Ronetta shared.
“They became more frequent in college… I was in a car accident in high school… But they weren’t really focusing on that at the time; they were focused on my neck and back.”
Over the years, Ronetta has tried countless treatments and seen numerous healthcare providers, often feeling dismissed or misunderstood. “My PCP had tried medications before being referred to a headache specialist. I was like, ‘I need to find someone who understands,'” she recalled.
“I went to her for a while, but I wasn’t too happy with the office setting. I don’t expect to hear loud music and bright lights in a headache specialist center. She was kind of brushing me off.”
Ronetta’s persistence paid off when she connected with a headache specialist who listened to her concerns and worked collaboratively with her. “I feel she truly understood, and she wants to be a partner in my journey,” Ronetta said. “She doesn’t say, ‘Do this and do that.’ I could reach out to her office via my portal, and she responds back to me right away. I have a good rapport with her.”
Navigating life with migraine disease has been a constant challenge for Ronetta, especially as a working mother. “I did have… migraine accommodations at work, so I had my own office. They had to change my lighting… I keep the shades closed because it’s just too bright and I have two monitors in front of me,” she explained. “I do have to cancel on things. I do call out because I just can’t function for that day.”
Ronetta has also experienced being racially discriminated against. “I went to the emergency room based on my doctor’s recommendation. The first thing the doctor said to me was, ‘I’m not giving you any drugs.’ I explained that I am not here for drugs. I’m here for help as I was instructed to do. He was very rude and condescending. I told him, ‘You are not looking at me as a person, you are looking at my skin color.’ At that point, I just wanted to be discharged. I made a formal complaint the next day. Being a woman of color, I had to speak out for others who have faced what I had faced.”
Despite the hardships, Ronetta has found strength in advocating for herself and others affected by migraine disease. She has been actively involved with the National Headache Foundation, participating in Headache on the Hill and sharing her story to raise awareness.
“I’ve been to Headache on the Hill, both virtually and in person. I spoke with the mayor about Chronic Migraine Awareness Day… I’ve been part of Lundbeck… I just try to do as much advocacy work as I can to spread awareness and education,” Ronetta explained.
Ronetta’s journey has also had a profound impact on her family. Her daughter and son have both experienced migraine attacks, and Ronetta has become a mentor and resource for them and others. “I have a couple of cousins who told me that they have them as well, who are always looking for me for advice, asking, ‘What do I do?’ and ‘What do I say?’”
“I have a couple of girlfriends who reach out to me that their daughters started having them, and ask what support I can offer them or what they can do,” she said. “First thing I say is keep a daily log to see a pattern, that includes working, exercise, hydration, menstrual cycle… smoking, drinking. Just put everything that you do for your day. Do it for weeks so that you can compare the next week to see what changed,” Ronetta advised.
As Ronetta looks to the future, she remains hopeful and determined to continue her fight against migraine disease. “I’ve just been doing different advocacy initiatives so that other people don’t have to go through this alone,” she said.
“I call it my three E’s of empowerment, encouragement, and engagement. We have to encourage each other and support one another with what we’re going through, and encourage that next person. We have to empower each other to not be afraid to speak up… Engage with each other to keep continuing to support this because it’s out there. People just don’t talk about it enough, and there’s not enough research.”
Ronetta’s resilience and dedication to raising awareness have made her a true inspiration in the migraine community. Her story serves as a testament to the power of perseverance and the importance of finding the right healthcare team to support one’s journey with this complex and often misunderstood disease.
*Disclaimer: This real story was drafted with AI assistance and reviewed for accuracy by the National Headache Foundation.