‘Unheard’ explores living with sickle cell disease: ‘When we say we’re in pain, we’re in pain’

Episode 3 of theGrio's series features patients' views: “It’s permanently in survival mode,” said Zuhra F. Abdullahi. 

“People with sickle cell get better as they age…”

“You don’t look like you’re in pain…”

Those are some of the misconceptions and stigmas that chef and sickle cell warrior Zuhra F. Abdullahi deals with when it comes to living with sickle cell disease..

Sickle cell impacts the Black community in a major way. It occurs in 1 out of every 365 births, according to the Centers for Disease Control and Prevention. About 1 in 13 Black babies have the sickle cell trait at birth, CDC statistics show.

Abdullahi also noted that people with sickle cell don’t always look sick.

“I could go to the E.R. like this and say, ‘I am in pain’ because I have pain right now in my hip. But someone could look at me and be like, ‘That’s not pain. You don’t look like you’re in pain,’” Abdullahi told theGrio on its series.

Zuhra F. Abdullahi, a chef who is living with sickle cell, said people with the disease don’t always look sick. (Photo: theGrio)

“I’ve never had problems with my hips and joints [until] now that I’m 36,” Abdullahi reveals. “I’ve had problems with breathing, my lungs, my joints. I have had a stroke before. They call it transient ischemic attack (a temporary period of symptoms similar to those of a stroke). I didn’t even know I had it until [doctors] saw the brain scan.”

Dr. Tartania Brown, a senior palliative care physician at MJHS Hospice and Palliative Care who also has sickle cell, shared how the disease affects the body.

Dr. Tartania Brown, who has sickle cell, said being a patient and a doctor gives her both perspectives. (Photo: theGrio)

“SCD affects the red blood cells and the red blood cells are the workhorse of the body,“ explains Brown. 

“They carry the oxygen all throughout the body. And most red blood cells or people’s red blood cells look like donuts where my red blood cells look like bananas. As the red blood cell rolls around the body, it gives off the oxygen and it picks up that carbon dioxide. But a banana, it’s not rolling so well the way a donut would roll. It also doesn’t have a hole in the center, so it doesn’t carry oxygen the way a donut can carry it. So persons with sickle cell disease have anemia because they don’t have the same amount of oxygen that a person without sickle cell does.

“The other thing is that a banana has points,” Brown continues. “So those points can get stuck as it’s rolling around the body. As it gets stuck, it causes blockages and those blockages are what causes pain. And because red blood cells go all throughout the body, they can have complications anywhere in the body from head to toe.”

Brown describes her pain as so severe and intense that it takes away her ability to breathe, to move, to think, or to function. For Abdullahi, it can be a constant throbbing pain or the pain you feel when a door closes on your thumb.

Being a patient and also a doctor gives Brown both perspectives. It is a reminder for her to take care of people the way that she would want to be taken care of.

“Care for sickle cell disease needs to be comprehensive care,” says Brown. “Comprehensive care is not just looking and managing disease, the pain of the disease, nor is it just managing the complications of the disease. Comprehensive care is also managing the psychological effects of the disease, the spiritual effects of the disease. Comprehensive care truly needs to be mind, body and spirit.”

When it comes to the changes that Abdullahi would like to see in the medical space, she expresses that hospitals need at least one medical professional who is educated on sickle cell disease in every emergency room. And there needs to be a standardized treatment for people who come in with a crisis, she says.

“See us within 30 minutes of us being there,” says Abdullahi. “Don’t do an EKG just to confirm we’re not dying and then have [us] sit and wait for you. It’s very painful because it’s a matter of time. If you don’t treat the pain right away, it gets worse and then it gets harder to control.

During one of her ER visits, on a scale of one to 10, her pain was an eight and a doctor gave her 0.5 milligrams of morphine and tried to discharge her before her primary doctor intervened.

“For some reason, my doctor goes on the computer and she checks whether or not I’m in the E.R. because she’s the one that sent me there and she saw [what] she was giving me and she had to call the ER and be like, this is crazy. ‘Her chest is hurting. [Her] oxygen level is low and you’re trying to discharge her after giving 0.5 milligrams of morphine three times. No’ “

That night, Abdullahi ended up in the ICU. She had acute chest syndrome. 

“Acute chest syndrome is the leading cause of death for people with sickle cell,” Abdullahi said.

She said the fear of mistreatment in hospitals stops many sickle cell warriors from seeking medical care and emphasizes that doctors and sickle cell warriors need to work together. Collaboration is the only way to go.

Check out the full video above.