Sharing My Truth

When I was in elementary school and first diagnosed with sickle cell anemia, I never talked about it honestly unless it was absolutely necessary.

Will people treat me differently if they know?

My mom didn’t want me to because she believed people would treat me differently. I never wanted special treatment and I honestly struggled to have productive conversations around sickle cell. When I would bring up the fact that I had sickle cell anemia, it was rarely well-received.

Most people didn’t understand what I meant and others hadn’t even heard of sickle cell beside a vague recollection of what they learned in biology. It was often disappointing to tell someone I had sickle cell one day, where I wasn’t in pain, and then have them forget when it came up again during a pain crisis. 

Sometimes I would choose to not tell people until I was having a pain episode and they needed to know, that was usually poorly received. They couldn’t understand why I hadn’t told them sooner and would get mad at me for blindsiding them as if I could predict when I was going to be in pain.

People couldn't handle my truth

I started to think that maybe my mom was right and people simply couldn’t handle my truth. As I got older and sickle cell started coming up more in my science classes, I realized it wasn’t my truth that was the problem, but the way in which people were being taught about sickle cell. In K-12 sickle cell comes up as a point mutation that has advantageous heterozygous protection against malaria but is lethal when homozygous. And that’s it!

A failure in education

No discussion of real people, living and thriving with this disease. So one day, I decided to do something about the lack of discussion around sickle cell.

Shattering the locks

In my seventh-grade biology class I told my teacher I had sickle cell and she invited me to lead the class in a more holistic discussion of sickle cell disease. I didn’t know it then, but that was the beginning of shattering all the locks I had placed around my disease. 

Advocating

From then on, I talked about having sickle cell a lot more. In college, I took opportunities in my English classes to write about my experiences with the disease. I got to change the narrative. I started taking on speaking engagements to educate my peers, medical students, health providers, and just about anyone who would listen. I didn’t stop there. I wrote for my school paper, I performed spoken word, and by medical school, I had written and published a short collection of stories and essays on living with sickle cell. 

Hope for the future

I’ve come a long way from the little girl too scared to talk about pain to being the advocate writing and speaking on her truth. Writing has become my biggest form of advocacy and my sharpest tool for enacting change in the sickle cell community and broader society. I look forward to the day where no one has to worry about hiding their truth and where everyone at the very least knows what sickle cell is and that real people are living with this disease.