I am passionate about raising sickle cell disease awareness. Increased awareness leads to a better understanding of the condition, which leads to more conversations about it. I believe that this will lead to conversations among people in positions of power, who can then take action to improve our lives.
For example, they can advocate for sickle cell patients to receive improved care and for more money to be directed toward research. That is my ultimate goal in raising awareness, and I do what I can to spread the word through various media. I write columns — including the one you’re reading now — I share my journey on Twitter, Instagram, and Facebook, and I organize awareness events.
I have been sharing information and raising awareness about sickle cell disease for a number of years, but over the last few months, it has increasingly felt like a chore. I’ve lacked motivation and struggled to do many of the things I loved, including raising awareness. Consequently, I started to feel pretty guilty.
I need to remember that although there is much to be done in terms of raising awareness, it is a big task to take on, and it doesn’t happen overnight.
Raising awareness does get exhausting from time to time, but I am not a one-woman band. It’s a team effort, and if I need some time out to rest and recuperate, I should take it and come back stronger than ever. I don’t want the exhaustion or stress of raising awareness to have a negative effect on my health.
During my time away, I realized that although I wasn’t sharing my story at that moment, there were still things I could do to help the movement, particularly by educating myself. I spent some time reading stories about other people with sickle cell, and I gained a deeper understanding of how it affects them. My break was much-needed, and I returned with a new perspective and more motivation to keep doing what I am doing.
Do you feel like you constantly must raise awareness about sickle cell disease? Please share your thoughts in the comments below.
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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