What I’ve learned from living with sickle cell disease for 39 years
A columnist shares some wisdom ahead of her birthday
How quickly time flies! I can hardly believe I’ve nearly completed another trip around the sun. It feels like only yesterday I was penning my thoughts for my 38th birthday column. I’m overwhelmed with gratitude that the warrior in me continues to prevail. I’ve survived another year, working toward new dreams, finding renewed purpose, and achieving my goals.
On Oct. 18, I will turn 39, putting me just one year shy of the big 40. Today, I want to revel in the miracle and the profound lessons I’ve learned from living with sickle cell disease (SCD) for nearly four decades.
Every birthday I celebrate is a powerful reminder that we have no right to make assumptions or pass judgment on other people’s lives. I’ve run into people I hadn’t seen in years, even decades, who seemed shocked that I was still here. I was once told I wouldn’t live past 18 years of age, and I’ve now doubled that. I plan to triple and quadruple it, God willing!
The wisdom of 39 years
More than anything, this condition has been a profound teacher. Living with SCD has taught me how to treat people better. I’ve been in countless difficult situations and have experienced complications I never expected, but this has made me more considerate of what other people may be going through. I’ve learned to put myself in other people’s shoes before acting or reacting. I know how it feels to be treated wrongly and rightly, and that wisdom now guides my interactions.
In addition, these past 39 years have taught me not only how to survive challenges, but how to maintain my happiness and desire for life despite acute and chronic pain, chronic fatigue, and many other sickle cell complications.
Crucially, living with SCD for this long has taught me the importance of speaking up and advocating for my rights as a warrior, and teaching others to do the same.
I’ve also learned the importance of expressing gratitude, even for the little things we often take for granted. For many adults living with SCD, pain is a daily reality. I’ve learned that a day free from pain and fatigue is a precious luxury that must be recognized and deeply cherished.
Another profound truth I’ve come to understand is that life is ephemeral. We all face death, whether or not we have SCD. Living with this condition has taught me strength; I don’t fear death because I know everyone will eventually succumb to it. This also helps me appreciate people more while they are alive, as they might be here one minute and be gone the next.
Finally, my 39 years have shown me the value of a strong support system, including a loving family, close friends, and active support groups.
My wish for the future
My only wish for the rest of my life is to be happy and fulfilled, while continuing to be a beacon of hope for sickle cell patients. I want every warrior who is currently struggling to know that you can do this. You can pull through and survive. No matter how challenging the road gets, you are capable of achieving all of your goals.
I also want to give a massive shoutout to all the efficient caregivers and healthcare professionals I’ve had over the years. You are all amazing, and I cherish you deeply.
I’m looking forward to another 39 years. Happy early birthday to me!
Note: Sickle Cell Disease 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 Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sickle cell disease.
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