Purpose and Perspective
Having sickle cell anemia has given me two things: purpose and perspective.
Although I do not believe that my disease defines me or feel particularly limited by it – except when I am actively having a crisis – it has shaped my life and my destiny. I believe everyone in this world is here for a reason and we spend our lives looking for that reason. And someday, hopefully, we get to fulfill our purpose. I knew my purpose and had a glimpse of my destiny from an early age.
Diagnosed with a not-so-rare condition
Being diagnosed with sickle cell and the trauma I experienced in the health care system from childhood through adolescence put me on the path to do something about it. As I learned about my disease and how many other children, who look like me, also struggled with the disease and what set me apart from other children, I knew I had to do something.
Driven to help others
Instead of succumbing to the anger and bitterness I felt when I would get sick, I used it to fuel me and drive me towards a higher goal. I grew determined to become a physician so that I could provide better care for sickle cell patients and shield them from the trauma I had faced. That single decision, that I made at 12 years of age, shaped the next decade of my life. I don’t think I realized what a big decision I was making at the time. I definitely did not understand what becoming a physician entailed.
The second thing having sickle cell anemia, or I’d imagine any chronic illness, gave me was perspective. I have experienced more pain in my life than most people will ever know. All inflicted on to me by my own body. My experiences with pain have given me insight, empathy, and patience. I consider myself an empath because I am so good at sensing the emotions and reading unsaid intentions of most people. I consider this ability a gift because it makes me caring and compassionate. But sometimes, it feels like a burden because I often feel like I care – about everything and everyone – more than everyone else does.
This burden especially plagues me in the medical field as my current role often requires me to witness trauma, but doesn’t allow me to do much about it. I am starting to see medicine again for what it is, even though I’ve known its true nature since childhood. I thought I could single-handedly protect everyone with sickle cell by becoming their doctor. But that’s simply not possible.
Turning to advocacy
So, I’ve turned to advocacy work. I use my spare time, though limited, to educate others and spread awareness on sickle cell. I’ve been doing it for so long and always saw it as part of my mission but I’m starting to see it as my purpose. When I am writing or presenting on sickle cell, why it matters, how the health system and society have neglected people living with the disease, and what we can all do about it – I feel something I can only describe as alignment. Like I am finally living in alignment with my destiny and purpose.
Do you consider yourself an advocate for sickle cell?