By Ariel Barnes

Growing up as a child with sickle cell didn't prepare me for adulthood with sickle cell, as a Black woman. When having a crisis as a child, I always skipped the emergency department line and was treated expeditiously. Whatever medicine concoction I requested was given right away, and bedside manner was at an all-time high. I was convinced that I would be okay during the most vulnerable and painful moments of my life. Fast forward 15 plus years and an opioid epidemic later, reliable healthcare was no longer my truth. My experience from several hospitals created a different narrative with healthcare professionals than I had as a child. Prejudice, racism, and medical neglect became part of my new norm. From the start of my college career until the present day, anytime I go to an emergency department (ED), I wear college paraphernalia. I did this in hopes that the doctors would decrease their judgment about me and notice that I am educated and not an opioid addict; many times, it didn't work.

Due to the opioid epidemic in America, sickle cell patients are prejudged for abusing opioid pain medicine during sickle cell crisis, making that their main reason for coming to the ED. To add on to this judgment, many physicians believe that Black women can tolerate higher pain levels than anyone else, therefore, decreasing the need for medical attention. As a result, the medications that were once given with no hesitation or doubt were no longer offered as an option or without a fight. Trips to the ED consisted of arguments with the doctors on call and being left in pain while lying on a bed in the hallway for 10 or more hours. During one visit, I asked a physician if I could get an IV to continue fluids to make sure that I wouldn't be dehydrated while waiting for pain meds. He responded that I could drink cups of water, and he would only give me ibuprofen and dilaudid (opioid) by mouth. Despite me telling him that I had these medicines with me currently and it wasn't improving my pain levels, he was adamant about making this my only treatment. I left this hospital at a level of 12/10 pain. I had to leave New York to travel to another hospital in New Jersey for proper treatment.

I have countless negative experiences with physicians, whether in the ED or while being hospitalized, who never took my pain levels as my truth. If I used my coping mechanisms of remaining calm and taking deep breaths, the assumption is that I'm not in enough pain. If I don't use a coping method and I come crying aloud, and in distress, I am faking it or overreacting. The best bedside manner and physician care only come from those who have loved ones with sickle cell or are part of the sickle cell community themselves. In my early 20s, I had a nurse who was in an NYU program to become a nurse practitioner. She had sickle cell, and for the first time in my entire adulthood, I didn't have to advocate for myself but knew I was in the hands of someone who completely understood my pain. After my experience with that nurse, it became evident that one of the main ways to reverse the lack of care given to sickle cell patients, especially regarding black women, would be to increase the number of physicians and healthcare professionals in the medical field who have firsthand experiences with Sickle Cell Anemia. It is my hope and goal to raise funding for fellow sickle cell warriors who want to further their practice in the medical field. Until then, we have to continue to be knowledgeable about our rights as patients, partner up with good hematologists, know our bodies, and continue to advocate for ourselves and each other.

Ariel Barnes is a 31-year -old Sickle Cell Warrior. She was diagnosed with Sickle Cell Anemia (SC) from birth. She’s currently an Educator (first grade is the best grade), and has been blessed to still live a successful life filled with accomplishments, healthy relationships and unforgettable memories. This would not have happened without her faith and hope in her Lord and Savior, Jesus Christ and her support system which consists of my family (especially her mom), close friends and fellow Sickle Cell Warriors. She does not regret being born with this blood disorder, or the experiences . God has created her strong enough to endure the pain in order to help support and advocate for others living with Sickle Cell. Her ultimate goal is to start her own Sickle Cell organization. Through this organization, she hopes to bridge the gap between teenagers and adults who have already trod and survived challenging experiences as a result of having this blood disorder. Most times, we are not aware of the resources we have as Sickle Cell Warriors, from our connections, natural remedies, information on disability rights and benefits.  She also has a goal to fund scholarships for sickle cell recipients who want to further their education in the medical field.