Published on 09/19/2021
Written by Pooja Shah
Edited by Cayla Xue
September is Sickle Cell Awareness Month! In order to raise awareness for sickle cell disease (SCD), we are sharing Jeremy's story this month.
Routine is something most of us take for granted. As important as it is to have new experiences, having a set, daily schedule is what helps us have a productive day. When that schedule is routinely broken, and even needs to be changed often, life can be tumultuous and exhausting. This is the story of Jeremy D. Cornelius, a licensed minister, model coach, and gospel saxophonist. After speaking to Jeremy, we were able to understand not only how this disease impacts his health, but also the decisions he makes in his day to day life.
Living with Sickle Cell Disease
Jeremy was diagnosed with sickle cell disease (SCD) at the young age of two, and has lived with SCD for his whole life. SCD is an inherited condition in which the red blood cells are shaped abnormally (read more about sickle cell disease HERE), causing characteristic symptoms of frequent infections, fatigue, and pain. This often leads to intense episodes of pain due to a lack of oxygen being delivered in the body, also known as a pain crisis.
Growing up Jeremy experienced many pain crises, which greatly impacted his interests and daily life. Although he loved playing baseball and track, his condition prevented him from doing this, so he got into concert band. He was able to participate in the marching band, but “after every field show, I (Jeremy) would have a crisis.” He went on to mention, “I spent my 16th birthday in the hospital. I spent my 18th birthday in the hospital… Growing up, I didn’t have many episodes, but when I did have episodes, they were pretty bad.”
As an adult, Jeremy experiences his crises differently. Because he travels and works more, his pain is more frequent. He told us, “I’m in some level of pain every single day. And that becomes difficult to deal with.” This frequent pain of SCD makes Jeremy’s days very unpredictable, as he never knows if his plans will work out. What makes it even more difficult are people who don’t understand what he’s going through, or try to overcompensate. He mentioned that when he feels good and wants to do as much as he can that day, people “yelling in your ear… ‘sit down’” can be hindering and irritating.
The Healthcare System
Along with the physical challenges of sickle cell disease, Jeremy spoke to us about the biases present in the healthcare system, and how that makes it difficult to obtain healthcare. Managing sickle cell pain requires narcotic drugs, which many patients grow a tolerance to as they get older because this is a chronic condition. As the doses get higher, many healthcare practitioners may suspect and accuse sickle cell patients of exhibiting drug seeking behaviors; however, sickle cell patients really do need treatment, and struggle with their pain daily. “When you go to the hospital, they look at you like you’re crazy because your tolerance is so high—but it’s not our fault.”
The very process of going to the hospital can be stressful for SCD patients like Jeremy. Jeremy told us how he often plans what time to go to the emergency room, in expectation of doctors and nurses who are more compassionate. Because crises are so frequent, SCD patients with pain crises often aren’t given high priority, and it can take a long time to get treatment. When he’s finally admitted, the doctors who handle sickle cell disease, hematologists, only handle the case until the crisis goes away. The case is then in the hands of hospitalists, who may not have as much experience treating patients with sickle cell disease. He is often discharged before he is ready to leave, and very little he can do to inform the doctors of his necessities.
What we learned
Jeremy has many hurdles to overcome in his day to day life, but he continues to persevere and take all opportunities. His strength is inspiring, and we can all learn from his perseverance. Another major takeaway from this discussion was compassion. It’s easy to establish patterns and assume the worst about someone, but part of being a person is taking the time to really understand what someone else is going through—especially if you’re in the healthcare field. Jeremy’s experience with the healthcare system has highlighted a need for greater empathy in healthcare, as well as how difficult treatment can be for rare disease patients.
Thank you so much, Jeremy, for sharing your story with us! Your strength is inspiring!
Check him out on Instagram @jerdecor !
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Citations:
Cornelius, J. (2020, September 30). Personal interview