A few months ago, a sickle cell patient walked into Linda Adeniyi’s art therapy group at Indiana University Health. This man was, at that very moment, in the midst of a sickle cell crisis: an episode of intense pain, as a sanguine pile-up of crescent-shaped blood cells blocked circulation to the body’s tissues.
He refused to go to the ER until the group finished.
“There’s that little bit of part of the brain that won’t let your pain do art and pain at the same time,” Adeniyi explains. “Pain still exists, but the focus and concentration are on the art.”
Those enduring a lifetime of sickle cell learn to navigate pain that—even on a “good day”—would lay waste to anyone else. This unenviable endurance evolves as a social defense as much as a biological one: many patients do everything they can to avoid getting labeled as “drug-seeking,” often by not requesting the level of painkillers that could actually dull their crisis.
“They have a resiliency that is unbelievable,” Adeniyi says. “Their 10 is my 110.”
At the same time, because sickle cell disproportionately affects those of African descent, this pain gets routinely dismissed, downplayed, or outright disrespected. This disparity snowballs into structural inequities: even in Indianapolis, sickle cell patients in crisis get admitted to the hospital through the ER, instead of a specialized clinic (like for patients with cystic fibrosis); meanwhile, an FDA-approved gene therapy “miracle cure” for sickle cell remains grievously inaccessible.
Derrick McKinney has attended the art therapy group since its beginning, just six months ago. But he grew up as a “Riley kid” at IU Health’s Riley Hospital for Children, having started receiving sickle cell treatments there when he was only two years old.
A lifetime of pain often results in social isolation—and even after years of treatment on the same campus, patients still pass each other by like ships in the night. Therapy has allowed them to really meet each other for the first time, while also providing a bridge that conversation alone cannot. “Art is everything. It’s controlling the uncontrollable,” McKinney says.
“Splattering paint on a wall is better than taking opiates,” he says. “It’s supplemental medicine.”
A dedicated writer who regularly visits the Indianapolis Museum of Art with his son, McKinney has also dreamed of starting his own art therapy group that isn’t tethered to a hospital setting.
Hospital visits often elicit their own complex emotions, especially among a population with long-standing distrust in the medical system. Conversely, hospital-provided programs can wind up shoestrung or sterile because of ethical and legal obligations.
“All of us are grown. We party, we hang out, we do things like other regular adults,” McKinney says. “I feel like a program for sickle cell patients, by sickle cell patients, is a lot more ideal.”
From touching short films to immersive paintings, McKinney credits art with providing the crucial dopamine—that breath of spiritual fresh air—that sustains him, and so many others battling this disease.
“As sickle cell ‘warriors,’ we’re not alone,” McKinney says. “If we can’t unite under sickle cell itself—because that is a trauma bond like no other—we should be able to bond and connect over art. Because it’s universal.”