Misinformation on Living with Sickle Cell Trait

I’m 29 years old and the sickle cell community and doctors still have a lack of knowledge of sickle cell disease and the trait. If they fully understand Sickle Cell Disease they would know that even the trait is unpleasant and causes health issues. I remember being 5 and 6 years old in the hospital. I did not understand what was going on with me but my mom fought and stayed by my side. She even found me people to talk to about what I was experiencing. I don’t even remember this woman’s name but my mom found her and she would talk to me about the pain. I would tell her what I was feeling and she would help me understand what was going on with me. Sadly she passed away but I am forever grateful. I’m grateful for my mom and her for opening up to us about her experience with Sickle Cell Disease.

Sickle cell trait gene

We were always told that people with Sickle Cell trait did not experience crisis. But that is so far from the truth. I just want to shine a light on my fellow Sickle Cell Trait carriers. I’ve had my first child and lord behold he has received the Sickle Cell trait gene. So now this will continue to pass through my bloodline. I have to warn my son to be careful who he falls in love with because we don’t want to bring a child into this world to suffer. I have lived with this my whole life and I continue to live with this. I was not happy when I found out my son had the trait because to me it meant he could possibly go through what I went through.

My childhood

All I can remember is being hospitalized and them not knowing what’s wrong with me but I was in so much pain. I remember one time I couldn’t move any part of my body but my head because I was in so much pain. I had a tough childhood when it came to making friends. I had a lot of fights at a young age and it did have to do with where I’m from and where I grew up but that affected me too. After I would have fights the next day my body would be very sore. And it honestly was not from getting beat up. I was a very good fighter, I had to be.

Getting older

As I’ve gotten older I have a lot of pains and I’m not sure if it’s my sickle cell or not. I just hope it isn’t because I wouldn’t want to be disabled while I’m caring for my son. That is my biggest fear. If I go into crisis and no one is around to take care of my son or help me. I honestly don’t know what I would do. People don’t understand what I go through and now I have back injuries and I’m in pain and my doctors don’t understand why I’m still in pain. So I’m making a note to let my specialist know I have sickle cell trait and my body doesn’t function like a normal person's body does. I just want to be understood and heard. I don’t want to be looked at like I’m a liar and my pain doesn’t exist because it does and it’s affecting me mentally and physically. I pray we can all find some peace in our storms. But people don’t understand when you have no control over your body and the pain just won’t stop how devastating it can be to your quality of life and the joys you are able to find in life.

Me and my son. His personality gives me life. He is my everything.