Living with sickle cell comes with dealing with so much pain. For Aaron*, his parent told him to stop working after two years because of his health, promising they'd take care of his needs. He agreed since he's not certain of how long he'll live.
Can we start with what your dream about work is, or did you even dream of working?
Not exactly. When all you're thinking of is surviving, you really don't have time to be making big life plans. I have sickle cell and I can't deny that my condition has affected my perspective on life and work. Good health is underrated, I tell you.
In short, I try not to make long-term plans to manage my expectations. But I still hope for stability at some point in my life when I can actually make those big plans like having a dream job and doing it. For now, I try to live.
Let’s talk about schooling. How was it?
I’ll try to keep it to my university days. Surviving four years at a federal university was a win in itself. Let me spare you the horror stories, but you can imagine how tough it was. I don't always look sickly, which means people don't immediately guess I'm a "Sickler" until they are close to me. My yellow eyes often gave it away that something was wrong though.
I was lucky to have close friends who knew about my condition and helped me during my crises. It helps that I speak up early whenever I start feeling any kind of discomfort; it’s one of the ways I managed to get through those years in school. And also, I try not to stay too far from family.
But, there's this thing with growing up when you get to a stage where you don't want to continue to be a burden to everyone. Looking at that mindset, I think it's self-destructive because I've noticed my worst crisis happened as I grew older because I don't speak up quickly about how I'm feeling like before.
It's depressing not being able to fit it most time. I want to do many things like many people; go to parties, travel, and all those stuff, but they would often discourage me, especially during the time the pains are just starting. I joke sometimes that my body is deliberately sabotaging me from having fun.
So sorry about that. What do you wish didn’t come with the struggle?
Adulthood, honestly. It’s hard to explain, but there’s this pressure to be independent, to fend for yourself, and to make something of your life. My parents always encouraged me to try and live a normal life right from when I was little, but let's be sincere, there's only so much I can do. I mean, they insisted I did NYSC, even though if it were up to me I wouldn’t have gone.
After that, I got a marketing job at a pharmaceutical company. It wasn’t a high-stress role, and I was genuinely interested in the work. But my crises became more frequent after two months, and it wasn’t long before I started to feel like a burden. The company was aware of my condition before hiring me, by the way.
Give it a try, you can unsubscribe anytime. Privacy Policy.
Suck at managing people?
Give it a try, you can unsubscribe anytime. Privacy Policy.
My teammates were understanding, covering for me, especially on days when it's only fatigue and migraines. But during full-blown crises, I was out for days, sometimes weeks. By the second year, I knew I couldn’t keep up.
Actually, my parents had stepped in since the first year, pleading with me to quit, promising to take care of my needs. They said they would pay me the equivalent of my monthly salary and see to my survival even if I wanted to go live on my own (I didn't agree to this though since I was comfortable living with my parents).
That must have been a tough decision. How did you feel about stopping work?
It was a mix of relief and guilt at first. Relief because I knew I couldn’t keep up with the demands of a job, and guilt because it’s not easy to rely on your parents as a grown adult like me.
To tell the truth, I only agreed because I'm aware of the life expectancy of sickle cell warriors, and it does not fill me with confidence. I mean, I've lost many friends in the same community with me, those we met during the hospital visits, and even my younger sister who also had sickle cell, died a few years ago.
So, I didn't really give any further thought to the idea of my parents "feeding me" as an adult especially as a Yoruba first-born child living in Nigeria, if you get what I mean.
My parents have kept to their promise so far, and if anything kept me up at night, it was never if I'd have my needs met. However, I don't ask for much since a lot already goes into medications and care. I love my parents and my only sister, their support keeps me going.
Sorry you have to deal with all that. So, what do you do with your time?
I try to keep myself busy as much as I can. I read a lot. I also draw, though not professionally, it's sort of therapeutic. I volunteer too whenever the opportunity shows up and I'm not too sick. I blog sometimes, about other things but my condition. But I like reading or listening to other people's stories about living with sickle cell.
When I’m not doing all that, I spend time with my parents and sister. We’re that close.
How long do you think you can continue living this way before deciding to go back to work?
I honestly don’t know. Some days, I feel restless, like I should be doing more with my life. On other days, I’m reminded of why I stopped working in the first place — the crises.
If I do decide to work again, it would have to be something extremely flexible. But for now, I’m just trying to take things one day at a time.
What’s your biggest concern about the future?
My parents. I can't help it, they’re getting older. I ask myself if I will still have the strength to do life on my own if they are no more.
But then, I'm not even sure if I'll outlive them. I try not to think of it too much though. For now, I’m grateful for the present, for the love and care I have, and for the miracle of waking up another day.
* - Not real name
You can find previous editions of Work Life here.
Do you have an interesting story for Work Life? Pitch to Oluwanifemi.
