I WAS ASHAMED, ANGRY AND DEPRESSED ABOUT HAVING SICKLE CELL

In life we encounter numerous challenges or obstacles as many people call them. Some obstacles are difficult to remove from your way and move on while others are difficult to remove and even tell the world that you have the obstacle.  But living life when you know nothing will change. Living with sickle cell disease is one of the biggest obstacles which comes early in life and continue until you go the world beyond. The most difficult scenario is when you cannot tell even your best friend that you are at war with sickle cell every day.

The famous poet Audre Lorde said, “When we speak we are afraid our words will not be heard or welcomed. But when we are silent, we are still afraid. So it’s better to speak.”

It’s difficult for someone living with sickle cell to admit and declare it publicly due to stigma and discrimination, just like in the case of HIV/Aids. The famous poet Audre Lorde said, “When we speak we are afraid our words will not be heard or welcomed. But when we are silent, we are still afraid. So it’s better to speak.”

I know what it’s like to feel like you are alone in the struggle to be well, maintain, manage and cope with having sickle cell.  I understand the constant battle to live a “normal” productive and uninterrupted life. Likewise, I also know it can be different to keep a positive attitude - to focus on what is good and right in your life instead of the pain and what you may feel is wrong in your life. It’s not easy to be of sound mind and good spirit when you are in pain. Sometimes it’s hard not to focus on what you are feeling at the moment.

There are “those days” when you feel as though the burden is much too, heavy – days when you grapple with who you really are and how you really live and cope with sickle cell.

Even on a good day, no matter how well you may happen to be, it can be hard to be hopeful or thankful that, at least for the moment, sickle cell is not in control. There are “those days” when you feel as though the burden is much too, heavy – days when you grapple with who you really are and how you really live and cope with sickle cell.

Only someone who has sickle cell can ever really know what it’s like to live with it. Sickle cell can cause havoc on the psyche; it’s so much more than the physical - it’s the emotional and mental as well. It was revealed to me in a recent conversation that even though sickle cell affects us differently, we are so much more alike than not. We have the same stories and we share so many similar experiences. None of us are ever really alone in our thoughts and feelings. I am so grateful for social networks like Facebook, Instagram, Whatsapp, and Twitter.

I thought it so unfair that I had to endure living with something that caused me so much pain in every single area of my life.

Back then, during my loneliest moments, I was ashamed, angry and depressed about having sickle cell. I thought it so unfair that I had to endure living with something that caused me so much pain in every single area of my life. I hated acknowledging sickle cell in any way, much less talking about it. I have come a long way from being the self-pitying, insecure, angry individual I used to be.

Today I stand strong and unashamed. I can talk about sickle cell openly and honestly. I thank God that today, I know that I am not defined by sickle cell and I am not alone. I share my journey and experiences to let my fellow “soldiers”/”warriors” know that they are not alone either. I need my fellow soldiers to know that there isn't a thought, concern or feeling that can’t be identified with somebody else’s.

Love Life!

Ssebandeke Ashiraf

Catch up with me HERE where you can read more of my written pieces on Sickle Cell Disease.