I turned 31 on Aug. 20, 2020.
That’s 31 years as a sickle cell patient, and what a journey it has been so far!
As sickle cell patients, we are often exposed to all sorts of negative comments and stigmas surrounding the condition. So, I want to use my birthday to wish all other sickle cell patients well and to share some advice I’ve learned over the years.
The crux of it is this: Live your life.
I am not naive to the fact that, at times, our lives are difficult and our journeys tumultuous. Though we would be wise to minimize any detrimental impact on our lives, life is also for living. The two can, and should, coexist.
Do not limit your life experiences or capabilities because you have sickle cell. In everything, of course, apply sense and allow for nuance in accordance with your body. For example, my body does not react well to heavy exertion, but that doesn’t mean other sickle cell patients cannot enjoy strenuous exercise. In fact, exercise has been found to have a positive impact on sickle cell patients.
Listen to your body, examine what it responds to and what harms it, then let this inform your life choices. This ensures you create a safe environment for your body — as much as you can control, anyway.
I’d encourage all to do this in addition to identifying the positive things and experiences your body responds to. Be equally motivated to use this information to build an enjoyable life experience for yourself.
Sickle cell need not be a death sentence or a reason to limit yourself — irrespective of the societal stigmas the condition bears. We can still build loving relationships with friends and family, even within the sickle community itself. We can enjoy work and entertainment, build families, and partake in holidays and hobbies — in nuanced ways, of course — to richly fortify our life experiences.
My hope for all sickle cell patients is that we each seek to build fulfilling and enjoyable lives for ourselves. I don’t want us to pay attention to the stigmas or negative generalizations. We experience more physical pain and emotional trauma than many people could even imagine or bear. Why shouldn’t we be permitted to enjoy our lives as and when we can?
We had no control over our diagnosis, and for the most part, we have no control over when a sickle cell crisis chooses to attack us. But we can control how we view and approach life. We can control the ways in which we choose to make our lives more positive.
I do not want pain to be my story. I do not want pain to be your story. Our legacy should be more than pain.
Note: Sickle Cell Anemia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Anemia News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sickle cell anemia.
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