A Lifetime of Not Being Taken Seriously
By Calli Barker Schmidt
Pain has been a constant in Gayle Bell’s life since she was a child.
But it’s been accompanied by another constant: medical professionals who don’t take her seriously.
Gayle is an 64-year-old African American woman in Lewisville, Texas, a far-north suburb of Dallas. Right now, she is living temporarily with her granddaughter, Amber, to help care for her infant great-granddaughter, Adira.
A writer and a poet who also loves dance, volunteering, and spending time with Betty, her wife of 10 years, Gayle has a full life. But getting to this point has been fraught with wrong turns, including problems seeking treatment and clear disparities in care as she seeks to navigate her pain journey.
Gayle started experiencing migraine attacks at the age of 8. By the time she reached her 30s, they had become chronic; she experienced more than 15 attacks per month. And after the birth of her second child, Gayle began to notice new, troubling symptoms—the extreme thirst and constant fatigue that often are the early signs of Type 2 diabetes.
“At the time, I didn’t have [health] insurance, so I was just taking the medication I could get from my free clinic,” Gayle shares—and she did not tolerate it well.
As she got older, she was also diagnosed with fibromyalgia and diabetic neuropathy. “It’s been really difficult for the last 20 years. I have had numbness in my feet and ankles, and that leads to body cramps,” Gayle explains. “The cramps are horrendous. Sometimes, they wake me up.”
She initially was prescribed muscle relaxers for the neuropathy, but after experiencing negative side effects, including feeling like she would pass out, she told her doctor she needed to stop taking them. Gayle says the doctor became angry and told her to find a new provider. Now, Gayle takes a different muscle relaxer, carefully monitoring its effects, and has found some relief.
The last two decades have been filled with Gayle’s search for appropriate treatment for her disabilities: a search that has been complicated by disparities and prejudice. In addition to the well-documented racial disparities in chronic pain treatment, she also has had to cope with stereotypes and assumptions about obesity and people with a history of substance abuse.
AFTER SUBSTANCE ABUSE RECOVERY, PAIN TREATMENT POSES CHALLENGES
Gayle’s use of alcohol and crack cocaine started as a way to self-medicate when the aspirin she took regularly didn’t help her chronic pain, but she ended up with an addiction for much of her early adulthood. It was the birth of her granddaughter that jarred Gayle onto the path to recovery. She shares, “I saw that little girl, and I thought to myself, ‘I am not going to be that person’”—the one with multiple addictions that her family had come to know.
With the help of regular Alcoholics Anonymous and Narcotics Anonymous meetings, Gayle has been clean and sober for 28 years, she says.
But although she has not abused drugs for almost three decades, she says her past still comes up when she is seeking treatment for her chronic pain.
“I think the most glaring thing in the decades I have been sick is that I feel that the racial disparity is getting worse,” Gayle shares. For instance, she has a white friend with a similar addiction history who also lives with pain and has been prescribed opioids, but Gayle’s doctors have told her they won’t give her the same medications because of her history of addiction.
Before Gayle was officially diagnosed with fibromyalgia, several medical providers told her the pain was all in her head.
“They look at me and they make assumptions,” she says. “I get talked down to a lot. I get a lot of over-explaining from medical professionals. I have felt that I have not been listened to.”
Her last neurologist tried botulinum toxin as a treatment, but it didn’t work—and the provider blamed its ineffectiveness on Gayle herself. “He started yelling at me,” Gayle recalls, and she felt too weak to fight back. “I said, ‘It’s a really good thing I am in pain right now, because this would be a whole different conversation,’ and I left.”
ACCESS TO EXPENSIVE TREATMENTS LIMITED
Gayle has adhered to her sobriety despite continued turmoil in other parts of her life. Her daughter Lea, who had kidney disease, died after spending a number of years on dialysis. Yet it was watching her daughter continue to advocate for her own care that helped empower Gayle to do the same for herself. “My daughter instilled in me the strength to become my own greatest advocate in my care, and that’s what I do now,” she says.
Inspired by her daughter’s self-advocacy, Gayle is determined to understand what’s happening to her body. “I do my research in journals of medicine—I go way into it,” she says, even though some of her doctors would prefer she Google less and leave the diagnosing to them. Referencing what she describes as “this God complex”—that physicians should not be challenged—Gayle says, “My daughter took no quarter with that, and I don’t either.”
Gayle is also caught in the Catch-22 of medical insurance. For years, she had none, making it difficult for her to afford expensive treatments for her migraine attacks, which have worsened in the last two years after a bout with COVID.
Even after obtaining insurance through state and national programs, Gayle struggles to access the newer, more effective medicines she needs. “I have been prescribed all kinds of different migraine medications over the decades,” Gayle says. Her doctor would like her to try butalbital, but she can’t afford the prescription. “The newer ones seem to work faster, but Medicare doesn’t cover them.”
CREATING A FULL LIFE
Gayle recently began keeping a more careful watch on her diet, hoping that eating healthy foods will allow her to better manage her diabetes without relying solely on medication. She has already lost 70 pounds—“not yet where I want to be, but I’m getting there,” she says.
Even though she has slowly but steadily started her own successful weight loss journey, Gayle is still classified by her doctors as morbidly obese, which seems to be yet another reason for them to dismiss her complaints. She recalls an interaction with a medical professional who illustrated more than one form of prejudice: “One pain doctor told me I should just back off on the fried chicken,” not believing her when she assured him that her diet is, in fact, a healthy one. Despite her extra weight, other health markers, like her cholesterol, are at healthy levels.
Gayle is still hopeful that there is an accessible treatment out there that can lessen her pain from fibromyalgia and the constant migraine attacks. She’s looking toward the future.
Meanwhile, she keeps busy with writing, her monthly poetry group, meditation, listening to music, and regular attendance at support groups, including one for mothers who have lost adult children and another for those living with chronic pain.
In February 2023, she helped organize the Alcoholics Anonymous 59th International Women’s Conference, which took place in Dallas.
“I have a full life in spite of the issues that I have with my body,” Gayle says.