Beyond the Pain Scale: Why Trust and Empathy are critical in Sickle Cell Care
You’d think hospitals—the very place meant to heal—would always be a source of immediate relief and understanding for people living with Sickle Cell Disease (SCD). But for many of us, the experience often falls short of the compassionate care we desperately need. It’s not just about getting medication; it’s about being believed, being respected, and receiving care that looks beyond just a pain scale.
Too often, we’re met with suspicion instead of compassion. We’re labeled as “drug seekers” or told we “don’t look sick.” Imagine being in excruciating pain, barely able to speak, and someone questions your reality. These moments are deeply frustrating and, frankly, re-traumatizing. As a sickle cell warrior and pharmacist, I’ve seen and felt this gap.
The Lingering Scars of Dismissal
I remember an incident back in university that still brings tears to my eyes. I was in a full-blown sickle cell crisis—rushed to the A&E by my sister. But all the nurses did was take my vitals and leave me on a cold metal waiting chair, writhing in pain. Minutes felt like hours. The doctor finally came, but instead of urgency, I got interrogation—like it was a casual visit. I sat there with silent tears streaming down my face, my pain dismissed as “not serious.” It wasn’t until my sister raised her voice that they even got me a bed. The memory of that dismissal, that lack of empathy in healthcare, still stings.
Years later, I was at the dentist’s, and after casually asking if I’d eaten, he made a comment—half-joke, half-warning: “I don’t want when I’ll give you injection now…” He trailed off, but the message landed. Condescending. Unnecessary. Hurtful. These subtle remarks chip away at a patient’s trust in medical professionals.
The Cost of Being Doubted: Avoiding Care
These moments stay with you. They make you question if seeking help is even worth the humiliation and emotional toll. Over time, many sickle cell warriors begin to avoid hospitals unless it’s absolutely critical. Not because we’re brave, but because we’re tired—tired of being doubted, delayed, and dismissed. This avoidance can lead to worsening conditions and more severe sickle cell crisis management challenges down the line.
The challenges of sickle cell in Nigeria often include these healthcare stigma sickle cell experiences, which add another layer of burden to an already complex chronic condition. We wish people knew about these invisible struggles sickle cell patients endure, beyond just the physical pain.
What We Deserve: Dignity, Belief, and Better Care
Every person, especially those living with chronic pain, deserves to be treated with dignity. We deserve to be believed when we express our pain and symptoms. We deserve efficient, empathetic, and informed care, free from judgment or suspicion.
Improving sickle cell patient experience in emergency rooms and other healthcare settings requires a shift in perspective—moving beyond stereotypes and embracing true patient-centered care. It’s about listening, validating, and acting with urgency and compassion.
Join the Conversation: Let’s Bridge the Gap
At Beyond the Crisis, we are dedicated to sharing these realities to foster greater understanding and drive positive change in healthcare for sickle cell patients. By highlighting these experiences, we hope to contribute to a system where every sickle cell warrior feels seen, heard, and truly safe when they seek help.
