All (blood) cells are not created equal.
All blood cells are not created equal. (2026) Watercolor and ink on paper.
I think the most invisible part of sickle cell disorder (SCD) is the fatigue — physically, mentally, emotionally and financially.
Because of how the blood cells “sickle”, blood flow is different, reduced. The blood cells also break down faster, thus the physical exhaustion.
A person with sickle cell can have the same 6 hours of sleep and still wake up physically tired.
Automatically, the playing field is uneven. You’ll plan a perfectly beautiful day only to be riddled by a pain does not announce itself before it hits you like a ton of bricks. The unpredictability is also tiring; you can imagine how unreliable a person like that can perceived to be.
Life with SCD sometimes feels like waiting for the other shoe to drop and there are different shoes, metaphorically speaking.
Financially, you’ll spend. Medications, out-patient care, routine checkups, scans…it can get expensive.
As you grow, you’ll learn to manage yourself as with all form of chronic diseases. You’ll recognize your limitations, learn how to advocate for yourself and grow to live fully despite how it can interrupt your cadence and force you to slow down.
I like to live my life not defined by the diagnosis of SCD. Like in Supacell, I like to see it as a “superpower” (laughs in romanticizing a genetic disorder) — like a constraint that reminds me that I have treasures in this frail jar of clay (my body).
I don’t know (exactly) what SCD is like for other warriors with it. A person can read about it like you may be reading this epistle, you can imagine and you can even watch someone you love or know live with it but the experience of it is deeply personal so I don’t assume or try to relate because I know my reality isn’t the same as the next person.
This is one of the reasons why I don’t often talk about it but this year I wanted to peel open this layer (of fatigue) and share that SCD is real. It is genetic. It can alter the quality of a person’s life. Particularly in a country like Nigeria where the healthcare system is beyond suboptimal, 100% would not recommend for whatsoever reason, love included, to have a child with sickle cell.
This is where I’ll kindly suggest the singles and soon to be married to ensure genetic compatibility with your partner even beyond sickle cell. There are other genetic disorders to consider as well.
Prevention is better than cure and the cure for sickle cell is a bone marrow transplant (or a miracle).
Learn more:
Nigeria - https://www.sicklecellfoundation.com/our-programmes
UK - https://www.sicklecellsociety.org/
To make blood donations, please visit Red Cross Organizations in your city/country or other vetted blood donor centers.
#sicklecellawareness
