The 3Es of Advocacy
Salt under the tongue, Vicks under the nose, hold your breath, put your feet in ice.
These aren’t spells from the long-awaited Hocus Pocus sequel, but instead the very real, very useless advice Ronetta Stokes, who has lived with migraine for 29 years, deals with from the well-intentioned but uninformed masses.
“It’s always, ‘Oh, try this, try that.’ And I’m like, you guys, you don’t understand. It’s not that simple,” she says. “It’s not just a headache.”
Engagement, Empowerment, Encouragement
These are the people that Ronetta, 47, most hopes to educate. Ronetta developed her own three Es of advocacy: Engagement, Empowerment, and Encouragement. By sharing her story, Ronetta hopes to reduce stigma and educate others about pain and migraine.
When she first started getting headache attacks, she didn’t want to talk about it. She only shared her pain with her family and a couple close friends, until finally, she realized she shouldn’t have to be in pain and isolated. So she turned to Facebook to find support groups.
“They’re very supportive,” says Ronetta. “And what you say… in the group stays in the group. If you want to vent, cry, talk about death in your family, or anything. They’re just always there to support you… it’s just like a family.”
She’s a member of 10 online support groups, but she takes her involvement off the web too. Ronetta logs steps with Miles for Migraine, a nonprofit; has attended Headache on the Hill, an annual advocacy event in Washington, D.C.; and is active in numerous other groups as a way to share her story.
“When I was younger, I didn’t have anyone to say, ‘Oh, this is what you’re going through. This is what you can do to help,’” she says. “So I might be able to be there for the next person who says, ‘I thought it was just a headache, but it’s constant now. Who do I reach out to? How can I find support?’”
She’s willing to discuss migraine with anyone, whether it’s her son’s teacher, or even City Council. In fact, thanks in part to Ronetta’s advocacy, last year the Mayor of her hometown—Bristol, Connecticut—issued a proclamation declaring June 29 Chronic Migraine Awareness Day as a means to draw attention to the disease and highlight the need for more research dollars.
Ten Little Pills
Ronetta started experiencing headache as a teenager in high school, which continued until she was pregnant with her daughter. While pregnant, the headache attacks stopped. She thought it was hormonal, but after the birth, she began experiencing daily headache. A neurologist finally diagnosed her with migraine.
“Then I got pregnant with my son. They stopped again. So I was like, oh, this has to be hormonal. But then after I had him, they were even three times worse than when I had my daughter. So now I’m thinking it’s really in my head, like, am I imagining this?” she says.
But though the pain was in her head, it certainly wasn’t imaginary. Her chronic migraine attacks are preceded by a swooshing in her ears, which she compares to ocean noises (but not the soothing kind). Then a tightening in the neck, sometimes a visual aura and nausea. But always pain.
Treatment is a scattered approach, racing against her body building a tolerance and hindered by what insurance will cover. Even though Ronetta has chronic daily intractable migraine, her insurance only covers 10 pills a month.
She constantly questions if the headache is pill-bad or just-bad and she can get through it without medication. “I bring all my medication with me to work everyday in a little bag. And I’m like, ‘Okay, what should I do now? It’s lunchtime. I feel something coming on but should I wait until I get home?’ So a little back and forth like that all the time, because I only get 10.”
She starts each day with a head pain that registers between a three and a five on the pain scale. Throughout the day, the severity of her pain skyrockets to an eight or a nine with what she describes as throbbing pressure and pain so crushing she wants to go lay down. And those 10 pills are already starting to be less effective than they were before.
“It’s chronic daily intractable migraine, what part of chronic does the insurance company not understand? It’s all the time. 10 pills are not going to help,” she says.
So instead she pushes through, even though she admits she shouldn’t. But she has a job and a family—she’s a mother of two and a wife.
Self-Advocacy, Ripples of Change
She jokes that being a mother was her first experience with advocacy. “I advocated for my son for school, but I never thought I would be doing it for myself,” Ronetta says. “So then I just said, ‘You know what? I can do it for him. I can do it for me.’ And my daughter also started with migraine. So I said I have [to advocate] for her and for the other people who don’t know how to speak up or who to talk to.”
It is that prevailing sense of justice and holding the door open for the next person that made her speak up after a particularly horrendous medical experience.
During an appointment with her headache specialist, her doctor noticed that Ronetta was slurring her words and her blood pressure was high. The specialist sent her to the emergency room (ER). That’s when things got bad. On top of the pounding pain in her head, she was left waiting on a stretcher for hours, causing her legs to spasm.
“I was treated like I was just there for drugs,” Ronetta says. “The doctor said to me, ‘Oh, you’re just having a headache.’”
She was offered Benadryl to stop her legs from twitching. She told the doctor she didn’t want Benadryl because it would keep her up instead of knocking her out. “And of course he was like, ‘Oh no, you’ll be fine. You’ll be fine.’ And I thought, all right, he’s the doctor, maybe I should just listen to what he says. But then I decided, no, I know my body and I know that’s not going to help.” She drove herself home with her leg still twitching. Then she wrote a long letter to the hospital, detailing her treatment. “[The doctor] just looked at me and just said, ‘She’s young, she’s female, she’s African American, I know what she’s here for.’ That’s how I felt like he was judging me. And I decided, no, that’s not going to happen,” she said.
The medical director reached out after receiving her letter and they agreed to meet in person. Ronetta wanted him to put a face with her name. She was informed the physician was spoken to, and is now on a first-name basis with the medical director. She has future plans for an handbook for ER visits, helping people learn to use their voice and set expectations.
“Change happens when we are all on the same team and hear one another out,” she says. “I am not just a number.”