Carolyn Rowley, PhD: Patients with Sickle Cell Disease are Born into Pain

Recently, the Cayenne Wellness Center launched the California Sickle Cell Disease Mental Health and Wellness Initiative to provide mental health services to those with the disease, at no cost. In addition to offering services on site, part of the initiative is to provide these services virtually so any patients in California can participate in treatment.

Carolyn Rowley, PhD, is the executive director of the Cayenne Wellness Center, which is devoted to supporting people living with sickle cell disease (SCD) in California. In an interview with HCPLive, Rowley reflected on her extensive experience in the field and shared the story of a patient who helped her realize just how imperative mental health support is.

When she got a call from a hospital nearby about a teenage patient with sickle cell disease experiencing a vaso-occlusive episode, or a pain crisis, she made the hour and a half drive and Bobby became one of her first patients.

While Bobby's condition appeared to improve, he was refusing to leave the hospital. Rowley explained that essentially, he didn't want to live any longer.

"My role was to convince him that life is worth living," she said. "So, I was on a mission, and I was going at least twice a week. And I'm also an adult person with sickle cell disease. So, I'm here to, you know, to be a model and say that 'life is so great and yes, yes, there is pain, but life is great, and you can have these wonderful peak experiences,' etc, etc."

Unfortunately, medical appointments and episodes of severe pain are not the only challenges these patients face. Stigma and bias are still prevalent for those with the condition, not only in society but within the healthcare community as well.

So, when Bobby asked her questions like, "Dr. Rowley, can you guarantee that if I decide to live that I will no longer be called outside my name as a 'sickler'?", and "Can you guarantee that I'll be believed the next time that I come [to the emergency department], and that I won't have to wait a long period of time, and that I'll get what I need?", she was honest.

"No," she said, "there's these biases and prejudices and we're here to advocate. That's what we do. I can't guarantee that it won't happen, but I can say that we'll make sure that it doesn't happen as long, and that we'll get involved."

Unfortunately, knowing his experience was not the last time he would "be called outside his name, knowing that he'll be seen as a 'frequent flyer', as a drug seeker, etc. -- it wasn't good enough for him."

"So, as I continued to see him, I realized that he had already resigned, and he was going to allow his body to atrophy," Rowley explained. "So, pretty soon I had to just accept and just go there to be friends."

The initiative is setup to enroll patients in 15 or more cognitive behavioral therapy (CBT) sessions because, according to Rowley, it's effective with depression, anxiety and sleep disorders and its shown to help patients improve shortly after they begin.

Also, the basis of CBT is for patients to develop tools to manage their own mental health and become aware of thinking patterns, irrational thoughts and other intrusive mental behaviors in order to address them.

"So, I do this for Bobby," Rowley said. "I don't want anyone else at 18 to say, 'I'm done. I'm done. I can't do this anymore, it's too much to not be believed, too much to have to suffer this way.' And that's why we do it, and that's why mental health support is so, so important."