The Unicorn Patient
For Arelys Feliz, the phrase “blinding pain” is not hyperbole.
The 30-year-old describes herself as a walking medical textbook. She was only 3 when she was diagnosed with sickle cell disease. Later, she developed endometriosis, migraine, and temporomandibular joint dysfunction (TMJ). On a pain scale of 1 to 10, 10 being unimaginable pain, she rarely dips below a 7.
“I’m the unicorn patient, any and everything that can go wrong, does,” she says.
Fighting for Care
Unfortunately, Arelys says she has to constantly fight to be taken seriously or get the treatment she needs to manage her pain. As an Afro-Latina woman, she is used to having her pain dismissed. She blames the stereotype that women, especially women of color, are better able to cope with pain. In addition to challenges in seeking care, she also has to do the emotional work to convince the medical staff to believe her.
“The crazy thing is that because I look like an African American, they don’t think I understand Spanish. [In Spanish, doctors] will talk to the nurse and say, ‘Oh this is just another Black woman here for pain.” She says she’ll sometimes let the doctor finish speaking to the nurses and then respond in Spanish.
The two most frequent assumptions Arelys faces are that she isn’t in pain or that she is lying about her medication dosing and needs.
The convincing and the hoops she has to jump through to be taken seriously means getting better takes longer. She estimates that she visits the hospital between five and eight times a year, with each stay lasting around six days. That is precious time away from her two young children, her husband, her friends, and from her job. Even once discharged, it takes about a week to reacclimate and get back in her groove. One hospital stay effectively wipes out a month.
It also means that she will sometimes delay treatment, wanting to avoid the exhausting battle ahead.
“I’m putting it off right now, for the last three to four weeks, just because I know I would probably be treated better at home, rather than going in and deal with everything that is involved with going in,” she admits. “I’d just rather deal the best I can at home, because usually going in, it gets worse before it gets better… It really is a challenge, and it’s difficult because I’m trying to convince them, to get them to believe what I’m telling them. Until they can see it in my blood work or it is tangible for them, they won’t [believe] what I’m telling them.”
For Arelys, providers not listening to her has had devastating consequences. In 2012, she was admitted to the hospital for pain, and things weren’t getting better. In addition to excruciating overall pain, her eyesight started to blur. It was diagnosed as a side effect of low hemoglobin and she was given a transfusion. Her blood pressure was through the roof, and her eyesight was still blurry. Again, she was dismissed.
“They just said, ‘Oh it’s normal having high blood pressure, it’s associated with your condition,’” she says.
Then, the optic nerve in her right eye ruptured.
“I’m legally blind due to the fact they just dismissed me and my pain,” she says. “How can you think I’m lying to you about my pain when my blood pressure is literally at the point where I could at any moment have a stroke? That’s how high my blood pressure was. That is the number one indicator that someone is in pain or having heart issues or something is wrong. How can you still say I’m not in pain?”
She won a lawsuit against the doctor, and he lost his medical license. She says it got her some money. “But it still doesn’t fix my issue. I’m still blind in one eye.”
A Lifetime of Fighting
From birth, diagnosis and treatment have taken longer for Arelys. She did not receive her sickle cell diagnosis until she was 3 years old, when her parents brought her to the United States from the Dominican Republic. Sickle cell is usually diagnosed at birth, with symptoms beginning to appear around four months of age.
Even with a lifetime of experiencing pain, she has yet to land on the appropriate words to describe agony. “Everyone perceives pain differently, so I just say, think of the worst pain you’ve had and times that by 1,000 or even by 10,” she says. That’s what she lives with every day. Nonstop, severe pain. Stress and weather can exacerbate her pain levels, but something as simple as getting out of a chair wrong can launch a week-long hospital stay. She says a “good day” is a six out of 10 on the pain scale. That is “functional,” where she can get through everyday tasks.
And everyday tasks are no small matter. Arelys is a mom to two young children: her son, Alijah, is 3; and daughter, Amaris, is 1.
“It’s tough,” she says. “My son is a little older, so he does understand when mommy doesn’t feel well. He’ll go get my heating pad or my medicine. But my baby doesn’t fully understand yet. You have to be the rock for them, but without overdoing it or putting myself in a bad situation where I’m not there for them for even longer because I’m in the hospital.”
Arelys is a network engagement manager for a management services organization. She works with primary care providers, pediatricians, and specialists to make sure they are providing the best care to their patients and finding areas where they can improve. Not only does her line of work accommodate and understand her conditions, it has also given her the inside track on advocating for care.
She is also involved with Sick Cells, an organized designed to give sickle cell patients a voice. Arelys describes it as a supportive forum where other patients “are heard and lean on each other” while encouraging them to speak out to providers. “Honestly, now it’s gotten to the point where it’s not as bad,” she says. “The doctors will put in orders, I don’t have to fight with them anymore to give me the correct regiment or pain medicines, or anything like that. Now it’s the nurses just passing their judgment. Claiming not to feel comfortable with medicating me with the orders the doctors placed. Before I was fighting the doctor, the hospital, and the nurses. Thankfully I’ve knocked it down to just the nurses.”
The only known cure for sickle cell is a bone marrow or stem cell transplant. The procedure is risky, expensive, and painful. It’s something Arelys is interested in exploring. But in the meantime, she says there’s one thing that would make her life slightly easier.
“If they would just listen. If they would honestly just listen and take me seriously for once,” she says.
—by Kirsten Ballard