The Prison that is Sickle Cell
Picture it. You wake up every day in dire pain. One day you’re in so much pain that you can’t even breathe, so you go to the Emergency Room for treatment. You get there with your face covered in tears, labored breathing, and you’re asked what’s wrong. You tell them your disease and instantly you’re told to “have a seat.”
That, ladies & gentlemen, is life with sickle cell disease.
What is sickle cell disease, you ask? The textbook definition is: a severe hereditary form of anemia in which a mutated form of hemoglobin distorts the red blood cells into a crescent shape at low oxygen levels. It is most common among those of African descent. MY definition?? A disease that keeps you in constant pain, and on most days, keeps you from functioning like a normal human being. It’s also a disease in which medical professionals prejudge you the moment you walk in the door and tell them you’re in pain.
Let me explain. As a SC patient, most of us have to take strong pain medicines just to try and function. When I stay strong, I mean SKRONG. Morphine, Fentanyl, Dilaudid. Yeah...those. So when you go to a doctor's office or an emergency room seeking help, you’re immediately looked at as someone that is an addict. Why? Because they see a black person, in “pain” and needing narcotics via IV. It’s hard to “see” when a sickle cell patient is in a crisis. You pretty much have to take their word for it until the blood work comes back, and even then that doesn’t tell the whole story.
Yes, there is a major opioid epidemic in our country right now, but that doesn’t give anyone the right to prejudge a person that is clearly in pain and sick. There has to be a way to distinguish addicts from those who truly need treatment. A chronically pained patient will be there no less than 3 times a year. I’ve always said that doctors should work hand-in-hand with fellow sickle cell patients to map out a treatment plan for when they are in a crisis and have to be seen in the ER. Take the time to get to know the person before slapping a label on their forehead and dismissing whatever it is they are saying to you.
Of course there are SC patients who abuse the system to get what they need. Hell, you’re going to find that with any disease. So why are WE treated differently? All I want is for the ability to be seen without having a doctor look at me funny. Or give me wrong meds because they don’t want to properly treat the pain. I refuse to die at the hands of some crappy doctor who doesn’t truly know how sickle cell affects the body of the patient.
To leave a SC patient that is in crisis waiting for hours to be seen is wrong. It’s negligence. The longer we wait, the worse our pain gets. The more it spreads. The more we are in danger of potentially losing our lives. This isn’t a disease to take lightly just because it is one that affects those of color.
All I want is the opportunity to get help without fear; fear of having a doctor that won’t properly treat me. Fear that I will never see my home again because the wrong meds were administered.
We are human. We are in pain. We do deserve proper treatment.