What Does A Pain Crisis Feel Like?
Last updated: September 2022
Everyone wants to know...
Having survived 30-plus years of the inner, physical harshness that came with my sickle cell anemia, I have often been asked what a pain crisis feels like. Those who are lucky enough to have never experienced a vaso-occlusive crisis, or witnessed one even, are often plagued by the thought and wondering.
First things first
What is a pain crisis? A vaso-occlusive crisis, what we commonly call a pain crisis, is the unfortunate result of what happens when the sticky, sickled red blood cells create a traffic jam, blocking blood flow to any area of the body where blood flows. These areas become deprived of oxygen. Once this occurs, there is but a minimal amount of time before tissue damage, bone death and stroke can occur. As well, Since the body is being deprived of such vital oxygen, natural inflammatory responses are set in motion as the body responds to this issue.
Preface from a warrior
Please allow me a point of personal privilege to express from a warrior's perspective, that this question is one that I believe has the potential to be triggering for many of us. The reason is because every pain crisis I've ever had caused me some amount of emotional trauma in addition to the physical trauma, both of which were often downplayed by those around me, whether intentional or not. I do not wish to be reminded of my worst moment, who does? Just take a second or two to recall the worst moment of your life, and then imagine that that moment could happen again at any point in time.
On top of that, and understandably so, people keep asking you what it felt like. Pure misery. All of it. From the fear of a crisis, to the pain itself, to the amount of time spent in that ungodly state before relief comes, to the lack of compassion and care often experienced in the emergency department, to the financial burden that is thus created, to the ultimate fear of whether or not this would be the big one, the one that would end your life.
An accurate yet unsettling answer
Imagine that you are perfectly content. Now imagine that in the span of about the time it takes to listen to your favorite song suddenly you look down and realize that your forearm has several too tight rubber bands around it that are inhibiting proper blood flow. (Please don't try this. Use the power of your mind.) After just a few moments you would surely find it difficult to focus on anything else but removing the blasted things, would you not?
Now imagine that you are unable to remove the too tight bands from your arm because within a few short seconds you realize that not only has the pain gotten quite worse, but you now, your whole arm is covered in rubber bands from armpit to wrist. You look at your other arm and it is now also covered in rubber bands that now have both of your upper limbs in their deadly grip. With the inability to use your own hands due to the unbearable booming throbbing, you now find yourself at the mercy of someone, anyone who has the sharpest pair of scissors.
If you're a glutton for punishment at times not unlike myself, now imagine within the time span of your favorite 30 minute sitcom, all 4 limbs, torso and neck are covered end to end. Even your fingers and toes have tiny rubber bands all the way to the tips. What agony. What suffering.
A side note
Even as I sit here writing this pain-free and content, it still pains me to have to relay such an awful feeling to you, dear reader. If you are a warrior who may have been a bit triggered like I was writing this, I'm so sorry you've had to experience the compounded trauma of a crisis.
If you're someone who has had little to no experience with pain, and you have questions or thoughts such as "If the pain is that bad, I'd just pass out," or something similar, I'll be the first to say I wish I'd have thought of that! I jest, but what I mean to say is that humans today live such lives that we have collectively forgotten just how deep human suffering can go. And even though escapism is trending these days unfortunately, we cannot just choose to lose consciousness as if that would solve the problem in the first place.
So who has the scissors?
Once a crisis is happening, you're already behind. It's go time. Your go bag better already be in the car or by the door because the countdown has begun. From the first moment of those throbbing pains, until the instant that relief comes is a race against death. Which brings us to the citizens who have chosen the life of a real life hero, our doctors and healthcare professionals. The moment you lay eyes on a sickle cell patient in crisis, remember you have the scissors. Having the power to end one's suffering is the first step, the next step is to utilize it. Anything less turns agony into torture.
Whomever may lay eyes on these words from now until the future, please take heed; Having anything less than compassion and understanding for sickle cell warriors simply won't do. For they have visited the depths of human suffering more times than anyone should. Not by choice, but of their very own blood.
Peace & Love my friends.
Which of the following sickle cell resources do you find most helpful? (select all that apply)
Join the conversation