Racial Bias, Lack of Patient-Centered Care Delayed Diagnosis

By Tara Bracco

In 2020, Isiah Lineberry lost the use of his hands, wrists, and fingers. His joint pain was so intense that he couldn’t complete everyday tasks like dressing himself, carrying groceries, taking out the trash, or cooking meals.

In order to drive his car, he had to wrap his wrists and hands securely with elastic bandages to limit any movement that would bring on pain. He used his forearms to steer the vehicle since he wasn’t able to bend his fingers and grip the wheel.

“I had to push through,” says 71-year-old Isiah of the excruciating experience. “I had this determination not to give up, knowing that I would have the strength to do what I needed to do until somebody figured out what was going on.”

DISMISSED BY DOCTORS 

But the road to figuring it out was a frustrating one, leaving him in pain for two years without an answer or proper pain treatment. Doctors wrongly attributed his joint pain to gout, Sjögren’s syndrome, and inflammatory arthritis, other medical conditions he has as well. Gout is a severe form of arthritis impacting 4% of the population, and Sjögren’s syndrome is an autoimmune disease that attacks moisture-creating glands, often causing dry eyes and mouth.

Contributing to the delayed diagnosis were the disparities in the level of care Isiah received as a Black man, despite his work as the executive director of a free health care clinic in Georgia. Even though he is well-informed with a long career in health care policy, access, and clinic administration, he still experienced disparities when he personally sought medical care.

One interaction with an orthopedic specialist stays with him the most. The physician, Isiah recalls, was dismissive and disrespectful. After his first and only examination with this doctor, the physician gave Isiah one cortisone shot and sent him for physical therapy. When the severe pain returned, Isiah called the doctor’s office and was told by the physician’s assistant that the doctor would not see him or prescribe medication to relieve the pain.

“I was emphatically told that he would not under any circumstances give me any pain relief options,” Isiah recalls. Then he read a research study that stated many medical students and residents believe that Black people have a higher tolerance for pain and don’t need as much pain medication.

“After I read that article, I said, ‘That’s it,’” Isiah says, realizing that’s what happened to him. “I believe this physician, who refused to give me options for my pain, was unfair based on race.”

He turned to high doses of ibuprofen, which contributed to the chronic kidney disease he has today. After seeing a rheumatologist, Isiah was initially diagnosed with inflammatory arthritis while doctors explored the possibility of psoriatic arthritis. However, the specialists would only give him one prescription of prednisone for his pain. As a result, he continued his dependence on ibuprofen for pain relief and for limited joint functionality. In retrospect, Isiah believes that these physicians had also bought into the myth that Black people have a high tolerance for pain and don’t need as much pain medication.

A COMPASSIONATE RHEUMATOLOGIST

It took visits to several different specialists before Isiah was properly diagnosed with systemic lupus erythematosus (SLE) by a rheumatologist who listened and was patient-friendly in her approach. SLE is the most common type of lupus, an autoimmune disease in which the immune system attacks its own tissues, causing widespread inflammation and tissue damage in the affected organs. In Isiah’s case, the most painful aspect of the disease is how it affects his joints and muscle tissue. Lupus also contributes to his chronic kidney disease.

By the time Isiah saw the rheumatologist who diagnosed his lupus, he was wearing braces not only on his hands, but also on his feet, knees, and ankles.

“She said, ‘The first thing we are going to do is get you some help for your multiple discomforts,’” he recalls. “For her to have that level of compassion, it made me cry.”

Instead of the single dose of prednisone that other doctors had prescribed, she gave him an extended dosage that was tapered off. After nearly two years of discomfort, he finally got some relief.

She also ran a battery of tests, sensing lupus might be a factor, and once the tests confirmed her suspicions, she put Isiah on daily doses of several immunosuppressive medications. When he has flares, his doctor increases his dosage of prednisone to treat his pain, a contrast to Isiah’s experience with the orthopedist who dismissed his concerns.

Now, with the medications, his mobility has improved by 90%, he says: “I can walk at a good gait. I’m able to help around the house. I can drive a car without discomfort.” Isiah’s specialist also did something else that he found remarkable. She communicated with his other doctors, shared data, and tracked results, and Isiah now has a team of doctors working together on his various medical conditions.

The rheumatologist’s care has been collaborative and patient-centered. “Ideally, that’s what should be happening everywhere for everyone,” he says.

GETTING GOOD CARE

Isiah feels he received better care from this physician in part because she is a woman of color. Besides his negative experience with the initial hand specialists, he recounts other cases of discrimination—a cardiologist who treated him with a medication without his consent, and a medical resident who refused to physically touch and examine him.

Isiah doesn’t suggest all white doctors are discriminatory or ineffective, but says a lack of training and a lack of cultural understanding contribute to the minimization of pain in Black people, often causing them to receive fewer treatment options than others.

“I’ve had a lot of interactions with doctors over the years. Most of my doctors have been Caucasian, and I’ve been treated with respect,” he says. “But there are those exceptions, and they take a toll on you.”

The most important trait Isiah identifies when looking for a doctor is not the color of the provider’s skin, but whether the doctor is respectful.

ADVICE FOR OTHERS

Isiah knows—from both a personal and a professional standpoint—the difficulties people face accessing the care they deserve. Finding a competent and compassionate doctor can be a challenge for any patient, but it becomes especially hard for people who lack transportation, have limited access to the Internet, or live in rural areas, he points out.

He recommends other patients look for doctors who consistently give quality care, have a good bedside manner, take concerns seriously, and listen to the full medical history.

Look at doctors’ online reviews and check their physician ratings, he says, and pay attention to mentions of whether or not the doctor treats their patients with respect and dignity. Additionally, ask family members and friends if they know of doctors who provided respectful, compassionate care to others who had a health condition similar to yours.

For Isiah, asking for help from a friend who is a medical director was his most important step; that’s how he was connected with the rheumatologist who has really helped him. Concerned about the “carelessness” of his previous doctors, Isiah was also able to have his friend review his medications and medical history to point out potential issues or oversights.

FAMILY, FAITH, AND HOPE

Throughout his health struggles, Isiah has received support from his wife and his two adult children. He has also found great comfort in his faith in Jesus.

“Prayer helps me endure and push through the pain and immobility until some sort of relief sets in,” he shares. He calls his current rheumatologist “an answer to a prayer.”

While he eventually found a good, caring doctor, his search for treatment and relief took much longer than it should have, he says. He wants other people to be aware of how doctors are treating them and keep pushing for the treatment options they deserve.

“If you are a person of color, be aware that you may receive inferior care because of your race,” Isiah says. “Try to find physicians who are competent, patient-centered, and not racist.”