How did I learn sickle cell disease management and other life skills?
A columnist looks at learned behavior and the importance of role models
For the past few days, I’ve been thinking about learned behavior. For example, why do I speak the way I do? Why do I respond to specific cues the way I do?
Upon reflection, much of it stems from my environment, how I was raised, and with whom I interacted while growing up. Those interactions paved the way for my behavior today.
However, I didn’t really have any role models with sickle cell disease that I could learn from as a child. Some key traits I’ve had to develop on my own to manage sickle cell are resilience, determination, and perseverance. With no direct role model to learn these traits from, how did I work on achieving them?
Support network
Despite not having anyone around who had sickle cell, my support network made me feel like I wasn’t alone. They didn’t experience the pain I was feeling, but my mum and grandma supported me when I had sickle cell crises. They were awake during my sleepless nights and constantly ensuring that I was OK. This devotion and care to look after me prevented me from feeling isolated all the time.
Encouragement from my caregivers also pushed me to go beyond the limitations that sickle cell had placed on me. Through our shared experiences, I was able to use those lessons and learned behavior in my adult life. As a result, I now have a more comprehensive support network that I can lean on and continuously be encouraged by. Additionally, my support network is now filled with role models as well.
Anime
My passion for anime is no secret. It started at a young age when I was inspired by characters like Goku or Naruto. Common themes included losing to a villain and then fighting to be stronger to win. I saw these battles as being similar to my journey with sickle cell. A crisis — the villain — would knock me down, and then I would need to search within to overcome.
Anime narratives often explore themes of resilience and perseverance in the face of adversity. To survive, you need unwavering determination and strength to push past your limitations. I suppose these characters were like role models to me because I learned not to succumb to my circumstances.
Hobbies
I have no sports or musical talent, but I’m a fan of both. You can always find hope and inspiration in music and sports. With music, a familiar melody might evoke a memory of a perfect time in your life, or the lyrics might resonate within your soul. In sports, your favorite team might win a championship or make a comeback against all odds.
In all of these situations, I find escapism to take me away from the reality of pain. I also now find role models. For example, some musicians have openly shared their experiences with sickle cell disease to create a form of self-expression and connection. Likewise, some athletes have shown me how to properly have an active lifestyle to improve my physical and mental well-being.
All of this shows me how easy it is to discover newly learned behaviors. Thanks to these role models, I’ve learned important behaviors that are beneficial to managing my condition.
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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