A Call for Respect: One Woman’s Story from Victim to Advocate for the Marginalized

A dedicated bird watcher, Heather B. frequently passes time observing the minute details of a beak, wing, or movement—at one point she owned five feeders. She marvels at the vibrant, primary-colored plumage of her favorite: the painted bunting.

Birding is more than a hobby for the 50+ year-old Ft. Lauderdale resident: it is a reprieve from the often excruciating pain she experiences from the moment she opens her eyes to meet the day. It is pain she has endured since 2006, when she was diagnosed with avascular necrosis (AVN), or death of bone tissue due to lack of blood flow. Heather has sickle cell disease (SCD)—the cause of the AVN. The condition can lead to fractures in the bone and even to the bone’s total collapse. Heather has two hip prostheses, which may soon need to be replaced on account of the decaying skeletal system around the artificial joints. Pain is notoriously difficult to articulate, yet Heather’s description offers a glimpse into the sensation. She explains: “It is deep in the bone and feels like pressure. It literally feels like your bone is going to explode if the pressure is not released.”

Some days her pain is so challenging that she’ll return to bed with a heating pad and “try the day” another day: “Sometimes I try Monday on Tuesday since Monday was a bust.”

SCD is caused by a genetic mutation that results in deformed, crescent-shaped cells—named sickle cells, as in the C-shaped farm tool. In a patient with SCD, the carrier of the red blood cell (in this case hemoglobin S) is abnormal, causing the crescent shape to form. When the sickled cells travel through blood vessels, they can build up and clog the blood flow, preventing oxygen from reaching bones and tissue. This can lead to what is known as a sickle cell vaso-occlusive “crisis,” resulting in severe episodes of pain that may last hours or even days and require emergency medical treatment and hospitalization. (Common triggers for sickle cell crises include cold temperatures, dehydration, infection, stress, and low oxygen.) In addition to pain, over time, the blockages can cause infection, organ damage, AVN, stroke, and even death.

Over the course of her life, Heather has grown deeply familiar with pain of various types, chronic and acute. She experienced her first sickle cell crisis during her birthday party in Jamaica, where she was born. She’d been swimming, and afterward, the chill of the air—one of several common triggers for a crisis—caused her blood cells to sickle, igniting intractable pain. Following misdiagnoses and subsequent episodes, tests revealed both her mother and father had a sickle cell trait; indeed, their daughter had the disease.

When Heather was a young girl, she read her first book on SCD and was dismayed to learn the average life expectancy was 20 years old. She says, “It’s very hard to plan your life when you’re 10, and you know you’re going to die in 10 years.” However, in spite of the terror and restrictions her red blood cells have inflicted, she has cultivated a life of purposeful direction which she attributes, in large part, to her faith as a Seventh-day Adventist.

Her path has certainly required grace and grit. After Heather decided to become a nurse, her doctor tried to talk her out of it, warning that she’d be on the front lines and susceptible to illnesses. Uncowed, she became a registered nurse (RN) in 1986 and practiced until 2006, when the AVN became too debilitating for her to continue working.
During 20 years as a practicing nurse, she gained a deep understanding of the inner workings of the health care system. But she also became aware of its pitfalls, including one that hit close to home: disparities in care.

As an RN she witnessed the substandard treatment for SCD, which she recognizes is inextricably linked to race (the disease heavily affects Black people and African Americans disproportionately). Over the years she’s watched colleagues who were unaware of her diagnosis disparage patients as “drug addicts” and “frequent flyers.” She’s seen patients’ pain often questioned.

Heather is certain her career in nursing allowed her access to more compassionate, meticulous treatment than most patients receive. Her current health care team consists primarily of doctors she has worked with professionally. But she does recall one particular experience with not being believed, at just 8 years old; the physician questioned her mother about the nature of their home life, doubting the severity of Heather’s pain and insinuating her daughter was seeking attention.

“I don’t think he believed I should be in that much pain,” she recalls. “And that is the unfortunate fact with sickle cell disease. I can be sitting here crisis-free and in another hour I am doubled over in pain. And it is hard for professors, high school teachers, doctors, anyone to understand how someone can go from zero to 60 so quickly if they’re not making it up.”

Heather is also discouraged by the overall lack of resources dedicated to finding a cure or better care for SCD. The disease receives far less medical funding for research and innovative treatment than other orphan diseases; for example, cystic fibrosis affects less than half the number of people, but receives more than triple the funding from the National Institutes of Health.

Additionally, she believes patients with SCD are discriminated against because of its chronic nature. Currently, there is not a cure for SCD, which runs counter to the culture of health care as well as society at large. “Unfortunately, society is geared in such a way that you have to get sick and get better or get sick and die,” she says. “With the lingering condition of suffering a chronic illness or chronic pain, society tends not to have any patience, any understanding, or any empathy.”

This reaction has compelled her to act as a catalyst for increased awareness. Heather is the disabilities ministry director at her church, where she plans walk-a-thons and hosts pain awareness tables at health fairs. She gathers pastors, panelists, and workshop facilitators to help raise awareness. She also writes a weekly blog on inclusion for her church bulletin. Despite her self-described “modified capacity,” she continues to inspire others with chronic pain to advocate for themselves. Heather says with a slight smile, “My passion is for the disabled and the marginalized. Those that are not seen.”

In addition to reading literature and being as informed as possible, Heather advises that patients persevere until they find a doctor who treats them with respect: “I believe there are more doctors out there that are compassionate than are not compassionate. So if you go to one and you’re not feeling acknowledged, heard, or respected—move on. There is always another. If you have to go to five or 10 consultations until you find the right doctor, keep on going. It will be worth it in the long run.”

Right now, Heather is anticipating the arrival of her treasured painted buntings that migrate to South Florida for winter. She speaks of the songbird with the devotion of someone who understands the healing power of being seen and recognized. “You cannot miss him. He is like, ‘I am here, look at me.’”
— by Sara Walsh