Navigating life as a woman in the world today is interesting. From Nigeria to Timbuktu, it’ll amaze you how similar all our experiences are. Every Wednesday, women the world over will share their experiences on everything from sex to politics right here. This is Zikoko’s What She Said.
The subject of this week’s What She Said is a woman who was born with Sickle Cell Disease (SCD). She talks about the first time she had a crisis, losing her sister to the disease, not allowing it stop her from enjoying her life, and how breakdowns are a regular part of her life.
What’s your earliest memory of your childhood?
I was a talkative kid and quite troublesome. My earliest memory is hiding behind a sofa one evening to avoid my mum, who was trying to convince me to go to bed.
Another memory is of a crisis I had.
Crisis?
It was a cool night, around 1 a.m., and I woke up with a sharp pain in both my knees.
Often, my crises start around joints, but the pain was unexpected and excruciating. It was so excruciating that I was rushed to a hospital emergency unit. I was bedridden for about six days and heavily medicated. I’ve never had a crisis as bad as that one since.
But you’ve had others?
Yes. I’ve had regular crises for as long as I can remember.
As I’ve grown, it’s become easier to manage and avoid crises, but I used to have one a day or four a week consistently for the majority of my earlier years.
How did your parents take it?
My family learnt about SCD the hard way and went through various hospital visits with my sister. So when I was born and later diagnosed, they were more prepared.
I grew up taking daily prescription medication, avoiding excessive sports and drinking a minimum of two litres of water a day.
Unfortunately, my sister died in 2013.
I’m so sorry.
It’s okay. My family understands only the basics. This made it hard for my siblings to understand crises earlier in life, but thankfully, my stepmother and legal guardian was a nurse; and she was always available during a crisis.
The first time I learnt about SCD in school, the biology teacher taught us that people with SCD can’t live past 20. It’s bullshit. I did the majority of my education on SCD by myself, with no help from my doctor or family members.
What about outside school? Where was the first place you heard about it?
I was young, maybe 7 or 8. I found out I had SCD by overhearing an early morning conversation between my stepmother and brother outside my room, the morning after I had had a crisis in the night.
They didn’t tell you before?
No.
Why?
I don’t know. I doubt I would have had any use for the information. I’m glad I didn’t find out any later than I did, but I don’t wish I knew earlier.
So, what’s life like for you with SCD?
I think of my body like a clunky old car. Since almost anything can trigger a crisis, I try my best to drink more than enough water, maintain a medium body temperature and avoid extreme stress.
It’s very touch and go, hence the comparison with an old car. I’m managing my body and despite how much I try, it breaks down often and I end up in the workshop.
What about the future? What does a future with SDC look like for you?
I used to despise thinking about this. I’ve been suicidal after crises, but this life na one.
I plan to travel, explore my many talents, taste many foods and work on my career goals.
In the short term, I intend to purchase equipment for a personal gym soon. I’m working towards a toned body ideal that I once believed was unattainable for me because I believed I couldn’t exercise.
I intend to live to the fullest, and see where that takes me.
What about a family. Any plans for that?
Maybe. If I choose not to marry and/or have kids, it will be for reasons outside SCD.
If I ever marry, I will not have biological children unless I do so in a country where medicine is advanced enough to avoid passing the sickle cell trait.
Do you think having SDC changed you in any way?
Yes, actually. It’s helped me be more empathetic towards people with chronic illnesses.
Alongside other things, having SCD has helped shape the way I live. I’m here for all the goodness, all the enjoyment.
I did not choose SCD, so why should I let it stop me from enjoying my life?
For more stories like this, check out our #WhatSheSaid and for more women like content, click here
COMPONENT NOT FOUND: donation
