The Power of Telling Your Story
Recently, Nigerian singer and songwriter Adekunle Gold became a trending topic in the sickle cell community (especially in Nigeria) when he opened up about his struggle with sickle cell disease. Everywhere I turned, it was the news, on blogs, on Instagram, and everywhere.
Although I was also surprised, I soon realized there was a problem. It was trending so much because many people cannot see people living with sickle cell achieve the kind of success that he has. Sickle cell disease has been synonymous with weakness and pain... some even see it as a curse.
It is sad that even today these thoughts still exist in some people, especially here in Africa. Warriors are still seen as failures, as people who cannot work and talk less about reaching the summit of their careers.
I can only blame that on one thing, and that is not telling our stories. There are so many warriors in different fields literally killing it, but society does not see them. Perhaps because they do not show that part.
Anyways, it made me realize how important it is for warriors to tell their stories.
Reasons to tell your sickle cell story
Stories have a profound effect on us as humans. And as someone living with sickle cell, here are some reasons to start sharing your story.
- To dispel myths and spread facts
So many myths about sickle cell are out there. There was so much noise about Adekunle Gold perhaps because people believed that sickle cell warriors couldn't be so active and successful.
The fact is that even with sickle cell, you can thrive in whatever you want to do. It might take longer, you might have to avoid some things, and you might have to work or practice harder, but nothing is impossible. When we share our stories, it can help spread this fact.
- To create a connection
Humans crave connection. One of the social needs for us as a human is a connection. We connect with each other through stories, through our "me too" moments.
When Adekunle shared his story through his newsletter, so many warriors, including me, related to his words. There is always someone who can relate to your story because they have either been in a similar situation or know someone who has.
Also, having sickle cell can be lonely. You need that human interaction to stay sane and become the best with sickle cell. Sharing your story can help you achieve that.
- To change the narrative for younger warriors
Let's be real with ourselves: sickle cell disease cannot be completely eradicated.
Before you begin to disagree, think of situations that can make people bring kids with sickle cell disease into this world. For instance, wrong genotype testing.
People will still fall victim to wrong genotype test results due to substandard laboratories. People will still fall in love and reproduce without considering their genotype because they believe so much in their faith. There will still be people who have casual sex without considering their genotypes.
My point is that the situations that make people have babies with sickle cell disease will exist as long as there is life. Whether you agree or not, there will be people living with sickle cell in the future. The question becomes, how do we make life better for them?
Telling your sickle cell story is a way to make life better for them.
One of the things I learned from hearing other peoples' stories as a young person was that sickle cell affects us all differently. This changed my narrative about sickle cell and I believe that younger warriors can learn a lot from hearing other warriors' stories.
- To build a community
Whether you are sharing your story online or offline, there is a chance that you would be able to build a community by doing that.
In fact, I like the online idea because you will be able to connect with people over the world. So whether it is starting a blog or a YouTube channel or whatever platform you feel comfortable using, being part of a community can help you in many ways. That connection can help you feel less lonely or isolated.
So, I hope these few points will encourage you to share your story. When you're ready, you can start here.
Have you had a special caregiver in your life?