How Sickle Cell Affects My Social Life
Sickle cell affects all parts of a patient's life: Finances, love, and our work, school and social lives.
It starts young
For me, this started when I was barely 2 years old.
I had no playmates or friends as a result of this. Parents were scared their kids might contract it. Stigma is one thing every sickle cell patient will talk about. I've always thought it would be better as I grow, it's actually worse now.
People may never understand
People might never understand, be there, love us regardless, or even help. It disgusts me still, but I've learned to live with it.
I am an extrovert. I love to socialize, party, have fun, travel, explore - name anything adventurous and I want to take a part in it. Aside from the devastating fact that my health gets in the way most of the time, I also have to deal with the stigma, judgment, tags of being lazy, and the heartbreak each time I'm pushed away because of it.
When we talk about workplace discrimination, every warrior of working age can relate. There is also the part where my parents were too watchful when it came to me. They had good reasons, but it only made me feel lonely.
Disapointed by those around me
I learned the hard way that most people who come close to me to help often have other plans. It’s a shame we can’t read minds and so their true intentions are revealed with time. Most of them take advantage to sell us drugs and take us to places for healing. Innocently, I will go with the hope of getting answers then the charges begin and never stop.
I fainted on a bus in 2014. I was on my way to pay my fees and I had cash on me. It was a lot of money. I was robbed by the same people who helped me to the hospital.
There are too many times people come to visit at home when I’m ill and things go missing. The annoying thing is you can’t ask, because then it looks like you are ungrateful. And when you do ask, it becomes an issue or fight. Over the years I’ve found myself from people more and more. These days I prefer being indoors and ignoring everyone except the few people that never give up on me. But there are times I shut them out too to have my alone time.
Sickle cell stories sound unreal
Opening up is really hard for me, especially because I am not sure what the reaction may be. Most of my sickle stories sound like tales to people.
They either can’t believe you went through that or don’t understand how you can still be alive after going through it. So I’d rather not share. If you ask me, I’m always good. Especially when it comes to asking for help. Be it monitory or support.
Changing what my social life looks like
I’ve learned to solely depend on God and myself. I’ve realized that I get disappointed on the days I need help most. So I trained myself to get through the worst moments alone rather than ask for any form of assistance. I let my hair down sometimes because I’m human but I’m always proved right at the end. So I’ve accepted the fact that I’m a loner and I embrace it.
I learn new things about my condition every single day. Especially now that I connect with other warriors and the story is no different. I’m beginning to lean more on other warriors than other people. No one can understand me like another warrior. I’m cutting off people a lot these days because I’m already too drained to be among people who make me feel alone. I’ve also found ways to spend time with myself more and I think I’m getting too comfortable with it. I’ll read, write, work, watch movies, make TikTok, etc. That is more fun to me than hanging out with people who don’t want me around anyway.
Society can't accept my condition
So there you go, I’ve turned into an antisocial being overnight because society can’t accept me with my flaws. Well, truth is, I prefer being the mean witch to being the sick girl. There is much more to me than that and I refuse to be less than I am.
What awareness month activities do you plan to get involved in?