What’s it like being a Sickler?

The first time someone asked me that question I shot back a typical Foxy reply “What’s it like being normal?”

I still get irritated when people make the mistake of asking that question. I mean, this has been my existence from the day one.  So how exactly do you want me to quantify it for you?  What do you want me to compare it to?


What does sickle cell pain feel like?


It’s a question that most people ask and it’s not an easy question to answer.  Pain is a sensation that everyone experiences to varying degrees but its not something that one can define.  Here is the thing; unless you have sickle cell you will NEVER truly understand what the pain feels like.


Why do I say this?  There is a clear distinction between ‘regular’ pain and sickle pain.  Regular pain is a fucking breeze compared to sickle pain, let me give you an example……… Black women addicted to the creamy crack (hair relaxer) I’m sure you can relate.


At 18, my pain threshold had gotten so high that whenever I relaxed my hair I couldn’t tell when my scalp was burning. Needless to say, the last time I relaxed my hair I was left with scabs that covered over 60% of my scalp.  That was the start of my natural hair journey…….. yes I shall blog about this too.


I realise that this might not be enough of a description for some skeptics out there so I did some research to see if there were any Sicklers who could do a better job, see video below.

So what happens when you have a crisis?

There are 4 types of crisis

1. Aplastic crisis
2. Haemolytic crisis
3. Splenic sequestration crisis
4. Vaso-occlusive crisis
I won’t go into the definitions but I have the great fortune of only experiencing vaso-occlusive crisis.  A vaso-occlusive crisis is caused when the sickle-shaped red blood cells obstruct capillaries and restrict blood flow to organs. 

So my answer is simple…….. unadulterated pain.


These ‘sessions’ can vary – from the ickle ones you can manage on your own, to the mutherfuckers that land you in hospital.  I still can’t decide which one I prefer…..   


The ickle ones tend to last from days to weeks.  You can still function, but the pain is in the background.  This can be frustrating, as you don’t know whether its going to get better or worse.  It also feels like it takes twice as much effort to get everyday stuff done. 


The mutherfuckers tend to be shorter (if there is no underlying infection), but the aftermath can be a bitch to deal with.  Let me explain……. 
The body’s reaction to pain is to tense up the muscles around the area of pain.  The longer your muscles are tensed, the more those muscles work.  During a crisis you’re too busy with the sickle pain to notice.  When its done, your body can feel like you’ve been hit by a bus……. been backed up on and hit all over again for good measure. 
 

The side effects of the pain medication are also something to consider.  They can make you

  1. Drowsy – this side effect I love because it forces you to take the time out.  You have no choice.  The body in its drugged state shuts down to heal.
  2. Constipated – same way the drugs slow you down, its slows down your digestive system.  The longer you’re on those meds, the longer it takes for your digestive system to bounce back.  In some cases I’ve had to explore the laxative route to unblock the ‘blockage’.  Picture that scene in Trainspotting where post heroin high, Renton (Ewan McGregor) uses a laxative suppository to sort out his constipation…….. No more words need to be said on that score.
The final thing I will say is that there is absolutely no dignity in pain.  There is no posing……AT ALL (insert bush Naija accent here).  Take a woman who is in labour or a man who has been kicked in the nuts.  The last thing on your mind when you’re in that much pain is how good you look, how badly behaved you are, other people’s feelings, or how cute the doctor who’s shooting you up with Morphine is.  You let go completely, this tumblr post sums it up beautifully.  

This has given me a ‘I don’t give a fuck’ attitude on a lot of things, and I think I’m better for it.  I don’t care what people think of me, or how I look to people.  I have been known to turn up at my friends house in my pjs, bedroom slippers equip with hot water bottle – who is named Babe.  It has contributed to the uniqueness that is me 🙂 .

Toodles!!


In my search for videos, I came across lil Zechariah’s video.  Maybe because it’s too close to home I couldn’t bring myself to embed it on this post but I still think it is important to share his experience with you.