This post is for Kem.
When I was younger, my parents kept my sickle cell a huge secret. They didn’t want me categorized and stigmatized as a Sickler. Although it was a good move in some areas on their part, it left me feeling like I was living a double life. When I was out sick, I would claim to have had malaria instead of sickle cell. I couldn’t really talk about my daily pains to friends and such, and couldn’t explain why I didn’t go swimming without outright lying that I was allergic to chlorine. Although it protected me from getting bullied in school, it also opened me up to a stunted social life.
So I immersed myself in books. See with books I didn’t have to explain where I was when I was gone, and I could still read them even if I was in the hospital. I think my passion for reading was developed more as a survival technique than anything else.
When I got to high school, I finally got to go away to boarding school, away from my overprotective parents. My sisters got enrolled in the same school but for 6 months, I felt kinda normal. I started telling people one by one, people that I was close with, and explaining my condition to them. Most people that hear about sickle cell and treat you bad just don’t have a clue what you are dealing with on a daily basis. I tell them in detail how awful the pain is and how it affects my life.
From this place of understanding, I was able to have a close group of friends that took care of me when I was sick and I was able to feel a sense of normalcy in high school. Even my teachers got with the program and kept me abreast whenever I was in the hospital for a prolonged period of time. Sure my parents still got their way and had the principal put me on a restricted activity program, but I wasn’t punished for it because I was open about it.
When you explain the ailment to people and you see the light of understanding dawn in their eyes, you allow yourself to be vulnerable but at the same time create a connection. Explain to people why your eyes are yellow…”I’m jaundiced!” then they ask was jaundice is. Knowledge is power, so empower your classmates to not be so closeminded and ignorant.
If you act ashamed of your disease, people will treat you like a pariah. If you act like it’s no big deal, just something you are struggling with just as they have things they are struggling with; then people will be able to relate to you. Break down the third wall of ignorance honey…speak up.