Hi, my name is Vanetta, I’m 23 and I have Sickle Cell Anaemia.
Writing that sentence just felt really weird, because whenever I introduce myself, that having Sickle Cell would be the last thing on my mind to tell someone. Not because I’m ashamed or afraid of what others will think of me, but simply because I don’t feel I am defined by it.
That is why the first time heard the word ‘Sickler’ used for someone with SCD (Sickle Cell Disease) a couple of years ago, I felt like someone had deeply insulted me.
I am NOT a ‘Sickler’ – I have SCD just like you have two eyes!
Okay, maybe that’s taking it a little far, seeing that your eyes will hopefully never hurt as much as my pain crises, but you know what I’m trying to say, right?
Or do you?
Because the way I see it is: it’s a chronic illness yes, but it is not constantly acute, so I live with it as ‘normally’ as I can; it may trip me up like many other things in life, but it WILL NOT hold me down!
But then I wonder do I only have this view of SCD, because I have been truly blessed as to how often and severe my crises are? Because the other day a friend was telling me that her relative, a grown male with SCD, is making preparations for his soon anticipated death, following severe bouts of crises which have left his liver totally damaged. He just had what’s expected to be his last family holiday with his wife and children and here I am saying I practically forget I have SCD until my annual major crisis occurs or my body softly start throbbing after a particularly ‘reckless’ day without enough sleep, drink or meds. And then on the other end of the spectrum are stories of cousins and family friends who haven’t had crises in 5, 10, 15 years!
What is it with SCD that makes it possible to see such wide ranges in experiencing it on a day-to-day basis? Is it just based on the medical treatment and information one has access to? Or the social support? Or is it what we personally do after having received the treatment, information and support?
What do you think of it? Is it a disease or a disability? Does it just (severely) ‘dis-ease’ you from time to time or does it ‘dis-able’ you completely? And what do you think is the deciding element in causing the difference?
Vanetta is a student at De Montfort University involved in the SCOOTER project.