How Can You Care For Me, If You Don't Care About Me?
Last updated: October 2022
To anyone who may witness me in a pain crisis, please do not judge me in my worst moment.
Living with a chronic illness, especially one as painful as sickle cell disease, creates a space between you and others. When you compare the amount of physical pain you endure daily to the amount of pain an average person without sickle cell experiences, you begin to realize why there seems to be a cavern between you and the rest of the world.
As evolved and intelligent as we like to think of ourselves, human beings still need to experience something in order to truly understand it. There have been times when I remember thinking that I wasn’t going to make it through this crisis simply because I couldn’t imagine even one more ounce of pain.
As a child with SCD, everyone around you in the medical system wants to make you better as quickly as possible. Nurses and doctors are swift in their actions and go above and beyond to make you as comfortable as possible. However, when it comes to sickle cell patients here in America, particularly, due to our sordid black and white history, once the innocence of childhood wears off and you are tossed into the adult care pool, trust and believe you must decide right then if you will sink or swim.
Unfortunately, however, oftentimes instead of being treated as a patient in need of immediate care and pain relief, you are now perceived as anything but... To be clear, how a patient is treated should never stem from the human urge to sum up a person based on one’s opinion.
As is stated within the bounds of the Hippocratic Oath: "I will apply, for the benefit of the sick, all measures that are required, avoiding those twin traps of over-treatment and therapeutic nihilism... As well, I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person's family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick."
Walking in another's shoes
I often wonder what my care would have been like if I had not been born female or if I did not have the invisible currency that we call “pretty privilege.”
I can recall many a day when a nurse or doctor was so taken by my hair, my makeup, my nails - whatever, that they just forget that I’m a patient in need of their care. Luckily, I know how to redirect without causing offense. However, I still feel as if I should not have to do that. I’ve been hit on, sexually harassed, and forced to smile during the absolute worst moments of my life. All because people find it unbelievable that someone so 'pretty and nice' could be in that much pain.
I’ve often wondered how they would behave if the situation were reversed. I’ve had too many medical professionals flat out dismiss my pain as a symptom of anything based solely on their inaccurate summation of who they thought I was.
I deserve quality care!
I am a SICKLE CELL WARRIOR. The first thing I knew in life was pain. I am and should always be seen as a patient deserving of quality care. When I enter the hospital, for whatever reason, I am to be treated with dignity and respect no matter what biases may be triggered by my existence. All humans are beautiful, and all humans deserve dignity, respect, and thoughtful, quality medical care.
Appreciating those who support us
To all of our teams of doctors, nurses, medical staff, and supporters, we offer our deepest, most heartfelt thank yous and offer blessings upon your work and legacies. I stand high on the shoulders of Warriors past, as well as all those who have done the work to help crush sickle cell disease.
Get to know us first!
I encourage you, whoever you may be, wherever you may be, the next time you are blessed to encounter a sickle cell warrior, consider getting to know them (unless they're actively in crisis, of course). Just ask them up to 3 questions about their experiences living with SCD and trust me, you will undoubtedly come away with a much clearer picture of what it truly means to endure.
Are you interested in connecting with other sickle cell warriors?