As a transcontinental transplant, I experienced alot of dramatic changes in how I was treated as a sickle cell patient in Nigeria vs my treatment in America.
Those of you who have read the archives know that although I was born in Nigeria, I only lived there from birth to 4 years old, and then from 10 to 18 years old. During those tween years, I was sick enough to need going to the hospital a few times. I had crises probably a max of 3 times a year, and it was usually during some highly stressful event like my birthday, going to camp, high school graduation or anything that I was under extreme stress and not taking care of myself.
I’ve gone to different hospitals, both public and private in Nigeria, and the care that I got varied from hospital to hospital, but I never felt stigmatized. The nurses gave me pain medication as ordered on time, and the nurses never gave me placebos or acted like they didn’t care. If they had given me a dose and I was still in pain 30 minutes later, they would call the doctor on my behalf as a PATIENT ADVOCATE. If I was in so much pain that I was crying and unable to cope, they would come to the bedside, hold my hand, give me warm compresses or menthol around my knees and keep calling the doctor until they got results. They would help me get washed up, get dressed, force me to eat, even if I was hurting so much that I couldn’t…and even though I resented this, my hospitalizations usually never exceeded 5 days.
Fast forward to America. My parents actually pooled all their resources into getting me to the USA, thinking that I would have access to the best medical care for my condition. Here I was, in the land of dreams, the country where people from all over the world pray to come to.
When I lived in southern Michigan and in Huntsville, AL; I was treated well. The doctors/nurses had very limited experience with sickle cell, but they had lots of compassion. They worked with me to develop the best care plan, and I went to the closest hospital whenever I had a crises, my records always transferred however, because it was the same hospital system. I felt like a regular patient, and never felt punished because of my condition.
Until I moved to Baltimore, Maryland, an area that is populated with lots of African-Americans, an area that has access to the best research in sickle cell, one of the best comprehensive sickle cell centers and a high demographic of sickle cell patients. These were part of my reasons for moving to Maryland…had I known, I should have just stayed right where I was in MI.
In Maryland, I got the worst treatment that I’ve ever had in my life. I was stigmatized, ignored, insulted and abused. In the ER of the hospital where I worked as a nurse; I was discharged still in pain, with no access to a wheelchair, no family member present and having to crawl to the waiting room on my hands and knees waiting for 45 minutes until my sister could come pick me up. I had many close calls with death in Maryland, once having to have a total blood transfusion (hemapharesis), and once slipping into a coma that lasted several days. When I was in the ICU, I was treated very well, but as soon as I got to the Med-surg floor, I once again achieved pariah status.
California was an extension of my Maryland experience…but the medical professionals in Cali were by far some of the most callous people that I’ve ever encountered. It was in a prominent California hospital that a nurse came in and told me to stop crying “You’ve had sickle cell all your life, you should be used to the pain by now.” It was in another Emergency room that the doctor had me in pain for 11 hours because she refused to increase my dose, having me on 2mg of Morphine every 4 hours (are you effing kidding me?). Her shift ended, and it was only then that I got relief.
I could go on and on and on, and I’m sure that many Sickle Cell Warriors all over the nation can tell you the same thing. When a patient has cancer, lupus or multiple sclerosis; they are given the best possible pain treatment plan. When a patient has sickle cell—they are treated like the bacteria on top of pond scum—and made to feel like they don’t matter, they are worthless and their pain doesn’t count.
When I see or hear of nurses diverting pain medications, giving placebos in place of real painkillers and ignoring their patient’s cries of agony, it makes my blood boil over. So yeah, if we are cynical, jaded, bitter and mistrustful of the medical system in the United States…I’m sure you now can understand.