Navigating grief and loss in our sickle cell community

There is something that some people do that bothers me when I tell them for the first time that I have sickle cell disease. I’ll introduce sickle cell disease into the conversation, and they’ll respond by telling me that they knew someone who died from the disease. They usually don’t state it very eloquently. Why do people do that? What response do they expect from me? Have they considered what it might mean to me?

I think people forget that as sickle cell patients, we live with the constant burden of possible premature death hanging over our heads.

One of the most common symptoms of the disease is a sickle cell pain crisis. When this happens, blood stops flowing to specific parts of the body, which can have grave consequences and be life-threatening. Surviving such a crisis isn’t always a given, and unfortunately, many have succumbed to this aspect of the illness.

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I know of six sickle cell patients who have died in the past year in London alone, including someone in my patient support group. While the cause of death has been different for each patient, it was related to sickle cell disease in each case.

I’m not sure I have the words to fully articulate how I feel when a sickle cell patient dies. I think people underestimate the connection we sickle patients have with one another, even when we are strangers by every other metric. My feelings are multilayered, and my emotions are difficult to navigate.

The first layer involves processing the loss. Someone was here just a moment ago and now is gone. That is a monumental thing to process, and it takes time. Thinking about all of the lives that have been affected and that will never be the same again as a result of such a loss is heartbreaking. A child is left without a parent, or a parent is without a child. Someone else lost a sibling or a friend. These are pivotal life changes.

The next layer involves grappling with the reality that we live with the same condition that cut someone else’s life short. What does that mean for us? Often, it means unparalleled fear. This is especially true when someone has died because of inadequate healthcare, as was the case in the 2019 death of 21-year-old Evan Nathan Smith, who died at a hospital in London. I can’t help but wonder what would happen if I ended up in a similar situation. Thoughts like this are constantly on my mind.

Then there is a layer that involves fighting one’s own selfishness. Someone has just lost their life and I’m here worrying about what it means for me. On one hand, I understand why, but on the other, I can’t help but feel like I’m being selfish by thinking about my own self-preservation at a time when others are struggling with loss.

Finally, when I’ve processed all of this, I become more determined than ever to dedicate my life to ensuring that the lives of people with sickle cell disease are valued. I will continue to fight to make sure we patients have the best care possible.

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.