What Is Sickle Cell?

What is sickle cell? My answer to this question will not be the one you are expecting.

This is not the answer you will find if you type ‘What is sickle cell’ into Google. This is not going to be the definition that is always given and socially acceptable because it can't be backed up by sources and referencing.

The reality of living with sickle cell

My honest answer to this question is the truth, which is scarcely mentioned and sometimes forgotten – even by me. My honest answer is the ‘taboo’ of sickle cell and the reason thousands of people living with it would rather the world not know they have it.

And if you require sources and referencing for what you’re about to read… I have scars for receipts!!

My honest answer

Sickle cell is... something that makes a 31-year-old cry for her Mum and Dad.

Sickle cell is... over shopping and over-cooking so that if you go into a crisis, you can survive without having to leave the house.

Sickle cell is... being an unreliable family member and friend for all the birthdays, baby showers, christenings, weddings, and more that are missed because you’re too unwell to attend.

Sickle cell is... losing out on thousands of pounds and missing out on girls’ trips and group holidays because you suddenly become too sick to travel.

Sickle cell is... being dumped by a boyfriend because they think being with someone who has sickle cell will be a burden on their life.

Sickle cell is... being off work so often that no one could care less what is wrong with you anymore. No one cares if you’re well enough to be at work, just so long as you are there.

Sickle cell is... the judgment from your work colleagues that just might make you leave if the pressure that comes with being well enough to attend doesn’t.

Sickle cell is... being dependent on health care providers who make your hospital experience a living nightmare by telling lies, being verbally abusive, accusing you of exaggerating, and taking advantage of your vulnerability because they are never held accountable for their actions.

Sickle cell is... experiencing pain so brutal with every breath that you actually consider making a conscious decision to take your last one, so you don’t have to feel it anymore.

Sickle cell is... losing a best friend because of complications that you may one day also experience, so you live every day like it is your last because you realize just how short your life expectancy could be.

Sickle cell is more than everything you thought it was before you started reading this.

It has made me into the woman I am

As much as I am now in control of my health, sickle cell is still a huge part of my life. Yes, I am an advocate and specialist for the cause, and yes, it has made me into the woman I am, but I’d be lying if I said it didn’t piss me off – let’s be real!

This is a harsh reality and let me just say that every individual living with sickle cell can have a different experience. So this may not be the case for everyone, however, this is the case for me.