Living With Sickle Cell Disease Is a Never-ending Battle

Getting appropriate treatment requires constant advocacy, this columnist says

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by Mary Shaniqua |

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Earlier this week, I received an email that left me in tears.

Its content is unimportant. But what I can share is that it was disappointing and related to things I require to manage sickle cell disease. I had been fighting for these things for nearly two weeks.

My frustration and anger stemmed from trying to correct someone else’s errors, and in the end, the right thing still wasn’t done. Being a sickle cell patient means constantly fighting for what we need.

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For example, I have to fight with first responders and at hospitals for the appropriate treatment. I have to fight for fair treatment in the workplace. I have to fight the stigma of having a chronic illness. I could go on. It is cumbersome.

Sometimes I don’t have the energy or the means to fight. But I must because there is no other option.

In these moments, I become jealous of those who don’t have a medical condition, or even those whose medical condition is widely understood and accepted. It must be nice to just live. I usually try not to complain and to see the bright side of life. I know life isn’t fair, but all of this has me bummed out. I need a break.

I long for the day when I can go to the emergency room here in the U.K., and don’t have to explain my condition, give a detailed breakdown of the National Institute for Health and Care guidelines, or be forced to validate my need for adequate treatment. I hope that one day, I can get the help I need quickly. I want there to be a time when I am not undermined simply because I live with an illness.

I realize that the hopes and dreams I have for an improved life won’t come without proactive advocacy by me and others like me. I have found that change takes determination and hard work. Thus, despite my weariness and frustration, and even through tears, I must keep fighting all of the battles that come my way. Only then can genuine, positive, and lasting change happen for me and all of the sickle cell patients who share spaces with me.

So when I received that disappointing email, yes, I cried. I screamed and shouted in frustration over the phone to my partner. But after that, I wiped my tears and put on an armor of professionalism. I got on the phone and on social media to advise the necessary parties that the wrong decision had been made and the wrong steps had been followed. I made the necessary noise to get the parties involved to take the right actions and, in the end, I got what I required.

Mission accomplished.

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.


tra avatar


Bonsoir Marie je trouve vos articles très intéressantes.
Actuellement je suis en fin de cycle et j'écris sur la drépanocytose. J'aimerai vraiment pouvoir discuter avec vous en priver si possible.


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