Founder of RCASs
On July 24th 2013 I experienced what I would probably call the worse day of my life. I had a 6.5 hour operation to correct a double curve of 85 and 75 degrees on my spine (yes nearly right angles). This extremely invasive and somewhat dangerous operation requires a very large, extremely talented multidisciplinary team of surgeons, doctors and nurses to perform.
My spine was straightened with the insertion of 2 titanium rods- both 50cm long and 28 screws bolted into my spine. I practically woke up in a new body and had to actually relearn to walk again. I have been left with a huge 45cm scar down my back, a reduced lung capacity which I struggle with every day and of course, pain- which forces me to stop everything I am doing and wait it out. I can't bend my back anymore so I can't move the way everyone else can.
As if it wasn't all over after 1 surgery, in November 2015 I had to have 3 of these screws urgently taken out when they made an incidental discovery of one of them being 2mm pointing right at my aorta- a scary finding to say the least.
Being a very hidden and misunderstood condition, I've learnt not all people are nice and I've had my fair share of awful comments from 'friends' that I will never ever forget. I've been called a liar, attention seeker, overdramatic, been told not to talk about operations or 'everyone is going to delete me'. There is 'nothing wrong with me', that 'some people actually have disabilities so I should stop making it up for attention and copying people.' People like this absolutely disgust me and I've been mentally scarred.
I don't often talk about it because I think I might be treated differently, I am self-conscious of my body- I hide my back and my scar and don't want to explain it to people, but I have so many things to be thankful for and the experience has made me a stronger person. I had the most amazing people that helped me push through, who saw and helped me at my worst. I was made a beautiful good luck book, had moral sidekicks for support at hospital appointments. I even made new friends from it, proving that people can be compassionate and caring about others you weren't even that close with beforehand. Those ones that saw me the worst I have ever been and probably ever will be. Then there was the many cookies and presents to cheer me up that were delivered. People like these are ones that I am forever grateful to have in my life and bring lots of faith in humanity.
Before you judge someone, remember that not everyone's illness, experiences or disability is naked to the human eye, and not everyone's is one you've even heard of. There are so many that are not well known but still exist.