Losing a friend to sickle cell brings a unique kind of grief

In recognition of Sickle Cell Disease Awareness Month in September, the Sickle Cell Disease Awareness Month campaign features a series of stories highlighting the real-life experiences of people affected by sickle cell disease, written in their own words. Follow us on Facebook, Instagram, or X for more stories like this, using the hashtag #SickleCellDiseaseAwarenessMonth, or read the full series.

I recently learned that my friend, fraternity brother, and fellow sickle cell advocate, a warrior, passed away after almost 50 years of living with sickle cell disease. What’s often not talked about, or at least, not transparently and honestly enough, is the impact of the death of your friends who suffer from the same disease as you. It’s raw, it’s real, and it makes you vulnerable.

Often, when death happens within our community, we don’t want to be selfish and make it about us. But it also IS about us. Within a community, you forge relationships and get close to people because they share the same experiences as you. It’s comforting to know that someone else knows what you’re going through.

Harris joined fraternity brothers in Houston for an annual event.

So, of course, when a friend passes away from the same disease you have, even when trying to resist the urge to make it about you, it’s hard not to. Grief in this manner is interesting. You wonder, “Am I next?” “Will I live longer than ‘so and so’?” “How do I make sure that I don’t die young?” and so on. Many of us immediately think, “What did that person go through?” or “Who didn’t listen to their pain or their needs?”

We grieve the friends who are no longer with us. But how do we avoid their fate?

It can be selfish to make it about you when someone dies from the same thing you are constantly fighting, but again, it’s hard not to. Many of us live in a constant state of grief. When we are a part of a community of chronically ill people, who historically are misunderstood, overlooked, and misjudged, ultimately resulting in a premature demise for many of us, we are constantly grieving a loved one, a colleague, a friend, who suffered the way we did.

What do you do with grief that never leaves? Constantly with you, because no matter how much you advocate, educate, or spread awareness, people you love keep dying from the very thing that you are working to combat. Sometimes you wonder if your efforts are in vain. Death doesn’t stop because you advocate for fair treatment.

This is how sickle cell has influenced my life. This is the impact we rarely talk about. I even struggle with making close relationships with others with sickle cell because I am simply tired of losing them. This grief grips us and never leaves. The fear constrains us.

I don’t know what my future holds, but I have built my life and legacy to ensure that future generations don’t have to suffer as mine did. Sickle cell has shaped my life by acquainting me with grief, an emotion that many shy away from and few understand. It’s an emotion that both propels me and confines me.