I Don’t Need a Reminder of My Life Expectancy With Sickle Cell Disease
As a sickle cell advocate, a key skill I’ve had to learn is patience. I need patience to listen, to understand, and to let go of negativity.
Early in my advocacy journey, I was speaking at an event, and an audience member shared their experience of having a family member with sickle cell disease. One comment really affected me: They weren’t expecting their family member to live past the age of 40. I had to pause before responding.
I was angry, because people have put an expiration date on my life as well. It’s usually an innocent remark, but it still makes an impact. For example, people will say, “Did you know that sickle cell patients typically only live to be …?” Or, “I heard the mortality rate for people with sickle cell is quite high.”
If life expectancies were accurate for everyone, it’s true that I’d have 22 years less than someone without sickle cell disease. If the average life expectancy for males here in the U.K. is about 80 years old, I’ll have moved on from this world by 58, meaning I have 30 years left. If I had a partner, I would likely die decades before them.
This is not a version of reality I am willing to accept. For many of us, death is a reminder that our time on earth is limited. Being told I’m not expected to live as long as the general population is unnecessary, as sickle cell already reminds me of that constantly. Each complication and crisis could mean my last day. I don’t need another reminder.
As I processed the audience member’s statement, I realized that I wouldn’t allow a life expectancy estimate to burden me. The person only knew the cold facts that had been presented years ago. They weren’t talking about me. In fact, that destiny doesn’t even have to apply to the family member they were talking about. Nothing is guaranteed in this life, chronic condition or not.
Given all of the medical advancements, modern technology, and new information that allows us to make better lifestyle choices, life expectancy is constantly changing. I will not be burdened by calculations that aren’t based on my life or my journey. Instead, I will continue to have fun and live life to the fullest. I don’t want to have any regrets. I simply refuse to succumb to a future I can’t predict.
The negative stereotypes associated with sickle cell fuel me to keep pushing forward and achieving more. This includes practicing patience.
So, by the end of my pause, I had listened, gained understanding, and let go of my anger and negativity. I simply responded, “Your family member will live as long as they are supposed to, because we all have a purpose.”
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