I can never get tired of saying is this:
"no two people living with sickle cell have the same experience."
It’s one of the biggest misunderstandings I see and one of the most important conversations we need to have.
So often, sickle cell is spoken about as if it’s a single story, a fixed outcome, or a one-size-fits-all experience. But that couldn’t be further from the truth. Living with sickle cell is deeply individual, shaped by a combination of factors that interact differently for each person.
First off, not everyone even has the same genetic type of sickle cell. Some people live with HbSS, others with HbSC, HbS beta thalassemia, and other variations. These differences alone can influence how often someone experiences pain, fatigue, or other complications.
But genetics are only part of the picture.
There are so many other things quietly shaping a person’s experience; things like access to healthcare, early diagnosis, medication, environment, stress levels, mental and emotional wellbeing, nutrition, hydration, and even climate. Over time, age and life stage also play a role. What sickle cell looks like in childhood can be very different from what it looks like in adulthood.
And then there’s life itself.
Support systems. Work demands. School environments. How often someone is believed when they say they’re in pain. Whether they feel safe enough to ask for help. All of these things matter deeply. This is why comparison can be so harmful. Just because one person experiences sickle cell a certain way doesn’t mean another will, even if their diagnosis sounds similar on paper. Also, just because someone appears “fine” on the outside doesn’t mean they’re not managing a lot behind the scenes. That’s also why support needs to look different for different people.
The most helpful thing we can do, whether as friends, family members, employers, teachers, or allies is to ask rather than assume. To listen rather than project. To support the person in front of us, not the version of sickle cell we think we understand based on past knowledge or someone else’s story.
Living with sickle cell is not a template.
It’s a lived, evolving experience.