Hello, my name is Fatima Auwal and I am a sickle cell warrior. I have read so many articles by others with chronic illnesses and felt compelled to tell my story.
I have a disease called Sickle Cell Anemia.
Sickle cell is a genetic blood disease created by a mutation in the bone marrow that produces deformed and or deflated blood cells. I want to emphasize that people are born with sickle cell. It’s not contagious or developed.
Instead of blood cells being round and full of oxygen, they become hard, sticky and crescent-like. When the deformed cells get stuck in blood vessels, they cause pain referred to as “sickle cell crisis.”
A sickle cell crisis can happen in any part of the body and can become as painful as child labour contradictions. A pain crisis can be triggered by dehydration, stress, cold temperature and infections. Sometimes, they are simply unexplainable.
I was diagnosed with SCD at the age of 6. Imagine being a 6-year-old and not being able to understand or articulate why everything hurts…. Or imagine, a mother watching her 6-month-old child endure a similar pain she just experienced months prior.
As a child, I described my pain as knives stabbing me from inside out. All sickle cell warriors describe their pain differently, but the most common description is the feeling of being stabbed repeatedly or being beaten with a bat in the same location(s). Other symptoms, to name a few, include fatigue, anemia, delayed growth, low immune system, stroke, seizures and heart attacks.
I lost my parents at the age of 14. I moved in with my uncles after their death. And it’s been a roller-coaster ever since.
To be diagnosed with sickle cell, both parents must have the sickle cell trait to pass the disease to a child. It is important to note that people with sickle cell trait can also show symptoms.
Some of us are lucky enough to live relatively normal lives, all I lacked was haemoglobin. Others are constantly interrupted by repetitive hospital trips and random health disruptions. Sickle cell patients do not have the same symptoms and we do not all look the same.
As a sickle cell warrior, I happen to have an invisible disease, and like most people with invisible diseases, people underestimate the level of pain and discomfort I experience. I have been told I was lazy, lying and seeking attention. I have been unfairly fired from a job and berated by “professionals” who told me I was “using my disease to get by.” As if spending a week in the hospital, being poorly treated by nurses, ignored by doctors to cry out, and leaving the hospital early to take care of myself was some sort of “advantage.”
I’ve had so many relationships that have failed. Imagine falling in love and every single time I get hit with excuses. I’ve had people promise to marry me but end up giving excuses that their parents are not “supportive” or they can’t handle my “condition.” It started to mess with my mind at a point in time. I became very insecure. I didn’t want to go into any relationship anymore because they’ve all failed, mostly because I was a sickle cell warrior.
They all kept fleeing faster than rats in a sinking ship.
I am sharing my story because I’ve experienced a reoccurring lack of empathy. I’ve had to join a support group to make myself feel better. To make myself feel like everything will be okay.
But still, the stigmatization from people was stronger than ever.
There were times when I would wish I had HIV and not the Sickle Cell. HIV patients could at least live a normal life but not sickle cell warriors.
An uncle of mine agreed to take responsibilities for my wedding. From the house, we’ll stay in, to the food we’ll eat, to my medication. All I needed was to find a suitor, and all the suitor has to do is whenever I’m in a crisis is to take me to the hospital and then call them to take over with my care.
But still, no stable suitor. Everyone believes this disease is contagious. i was not aware when my parents got married but i am suffering the consequences of their marriage.
I finally decided that I was done searching. It was draining every ounce of my self-respect. This made me conclude that marriage was out of my book. Maybe I wasn’t destined for it.
So, I gave up.
I am now 43 years old, an independent and a full time working woman. Having a chronic illness does not mean that we do not want to work hard and contribute to our world. It means that we must do so differently than other people.
I ask that those reading this right now to show empathy and sympathy, and understand that warriors do not want the latter. This article is for teachers, nurses, doctors, supervisors, managers and every single person. I ask that you choose empathy over cynicism, and to ask questions before making assumptions. This is why we call ourselves warriors. We have been fighting to live and thrive since birth and will continue fighting, but with a little more empathy and understanding, perhaps we won’t have too.
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