Triggers, Tells, and Uncertainty
I think most people see the word trigger and expect someone to be talking about or showing something violent. But when I say trigger, I mean something that happens before a sickle cell attack. People always ask me what triggers pain episodes and what the pain feels like.
The second question is nearly impossible to explain as every crisis can feel so different and vary for each person. So, I use a lot of analogies to describe the pain, some I’ve heard from other sickle cell warriors. Like feeling like you’ve just been tackled or like you worked out too hard the day before.
Describing the pain
I like to describe it like this: Imagine the worst pain you’ve ever experienced. Imagine if that pain could happen at any moment in time and you had no way of knowing when or if it was going to happen. And imagine that when it happens, you had no way of knowing how long it would last or how to make it go away.
Sometimes the pain is intense and short-lived like a sharp jolt. Other times it’s milder but enduring like a deep ache. That’s how much sickle cell pain varies.
What are the triggers?
Now as far as triggers go, the list is endless. The science is not completely understood but it seems just about anything in the right circumstance can trigger an attack just about anywhere in the body.
I’ve read about high altitudes, dehydration, stress, exhaustion, and extreme weather changes triggering attacks. I’ve experienced all of those except the high altitudes. I’ve had doctors warn me about going on airplanes and mountain climbing, but so far, those experiences haven’t been triggers for me. Thank goodness because I’m already afraid of heights and anxious enough on planes as it is. I’ve also heard about some unique triggers from other sickle cell warriors.
Knowing my tell
I have a weird tell. I’ll wake up in the middle of the night super thirsty and usually have an attack the next day. That’s how I know it’s coming but of course, I don’t always get a warning, and even when I do there’s nothing to be done about it. I suppose I could take medicine or plan for a light day when my schedule allows. And other times, it’s a surprise jolt of pain in class, aches before bed, or my least favorite – grueling pains in the midst of finals.
Sickle cell attacks are quite unpredictable and that’s the worst part. But having sickle cell has made me who I am. It has made me more thoughtful and considerate, not just with the needs of my own body, but also the people around me. It has made me more appreciative and grateful for all the things I am able to do and all the days I’m healthy. So I can’t complain too much.
It’s a learning game. Most people spend their lives searching for who they are, I know who I am in large part to having sickle cell. I’ve spent a lot of time with myself and getting to understand my disease, my triggers, and doing all that I can to not let having sickle cell limit me.
Do you consider yourself an advocate for sickle cell?