Hi, my name is Vanetta, I’m 23 and I have Sickle Cell Anaemia. The first time I 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? 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?
The first time I 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.