There’s something about living with sickle cell pain that I don’t think we talk about enough.
You can become too good at coping with it.
I want to really go deep into what happens when people experience severe pain.
Initially your whole body reacts.
You tense up. You panic. You might cry, shout, pace around or be unable to think about anything except making the pain stop.
But you can't sustain that response forever.
At some point, you have to find a way of existing inside the pain.
I sometimes think of it like getting into an ice bath. Of course I've never done this as it would likely trigger a sickle cell crisis. But if you watch people who do it you can see this process.
They get in and the initial shock makes their whole body scream to get out.
But if they remain there, eventually they start controlling their breathing. And they stop fighting every sensation. They appear much calmer outwardly.
Now imagine what happens in a sickle cell pain crisis. It's exactly the same process but with one important difference
You can't simply climb out when you want to.
As warriors many of us understand this ice bath process unconsciously from a surprisingly young age.
Survival depends on learning how to mentally function while experiencing pain that would completely overwhelm someone experiencing it for the first time.
Because there's only so many tears that you can cry and there's only so much energy that you can generate to scream. Eventually you learn that the pain is going to continue regardless and life can't always wait for you to emerge from it.
So your reaction to the pain changes. It still hurts but outwardly you appear calm.
But then something strange happens.
The perception of people around you changes.
That special ability to channel zen in the midst of a storm can start being used against you.
"You don’t look like you’re in that much pain."
"You seem fine."
"You were talking normally a minute ago."
"You managed to do that, so surely you must be feeling better."
The better someone becomes at managing their pain, the easier it becomes for other people to underestimate how much pain they're actually managing.
And we have to understand that people aren't doing this intentionally. This is just a natural reaction based on their own personal experiences.
But this reaction can be changed by listening to and understanding the life experiences of sickle cell warriors.
There are 2 main points to understand:
Getting out of bed, answering a message, having a conversation or even laughing at something does not tell you what somebody’s body feels like underneath all of that.
Sometimes what you are seeing is not the absence of pain.
You're seeing years of practice surviving it.
I think this is important for people living with sickle cell to recognise in themselves too.
You might have become so accustomed to pushing through difficult things that even you underestimate how much effort it's taking.
And for the people who love and support someone with sickle cell:
It's okay to ask, "you look okay, so are you better?"
But it's even better to ask:
"You’re managing really well. But how much are you actually having to manage?"
Stay Healthy,
Lewis
