What is scoliosis to me?

Scoliosis is a condition in which the spine bends to the side abnormally; either to the right or left. The curvature can be moderate to severe. Any part of the spine can be bent in scoliosis. It is often accompanied by a twisting of the body resulting in prominence of the ribs.

It was not a disease that put me into a neat little box. You can be born with it or develop it. You can get C curves or S curves. Crucially, in two separate cases of scoliosis with the same degree of curvature, one can get agonising back pain on a daily basis while the other can have none.  In fact, in the vast majority of cases scoliosis is not painful.

The majority of children with scoliosis require no treatment, as the condition resolves on its own as the child grows. A very small number of patients with scoliosis may require surgery. If left untreated, the condition can lead to serious spine, chest, pelvis, heart and lung damage.

I think it is essential that I stress these enormous variations; scoliosis is actually a quite common condition in growing children. You may be diagnosed with it but then never think of it again and get an ordinary level of back pain; a common complaint of around 10 million Britons. So if, on the huge off chance, you are reading this because you, family member or friend have been diagnosed with scoliosis please don’t take my experience as the universal model; just as every case of scoliosis is unique, my experience of it is unique to me.

I write this 3 years on from my corrective surgery and my feelings towards this illness have altered remarkably. What was my definition of scoliosis?

Life ruining.

I hated it. I hated that I had stopped dancing and I was too stubborn and proud to continue it as a hobby where I would no longer be at a professional standard. At 16, I made this decision on my own, still away from home at Elmhurst, and I guess I built alongside it a growing hatred for scoliosis. It is a visible deformity. Yep, it’s classed as a deformity and a disease ‘diseasing’ not just your body but also your mind. It was all I saw when I looked in a mirror, and of course the pain was a constant reminder. I couldn’t even look at an x-ray image without bursting in to tears; the image of ruination.

Puberty is a hard time for any girl, but this doubled with the ideals of beauty from 5 years of ballet school made this an even harder situation.

I felt very sorry for myself. I felt like… the most unlucky person the world.

I have a physiotherapy session at the John Radcliffe Hospital to thank for completely changing this.

It was not your average “pull around and give you some exercises to do at home” physiotherapy and more similar to a psychological and emotional investigation. The surgeons need to know how affected you are psychologically as well as physically because scoliosis surgery is an operation full of risks and should only be done when absolutely necessary.

She asked me, ‘What would you be doing now if you didn’t have scoliosis?’

Dancing. I had wanted to be a dancer. But having scoliosis and the pain had ruined that for me.

She continued to question me on what dancing meant to me, how much I had achieved and brought to the table all the wonderful, good things that had come from the years I’d enjoyed at Elmhurst. I answered her with total, and almost exhilarating, honesty (as best I could through the tears) and there was something amazingly therapeutic about focussing on the good times. It was there that I realised just how lucky I was. I should not be bitter or full of self-pity but thankful to have experienced it at all.

She then told me to take a little box and put all the happy memories inside, close the lid and put it away safely in the back of my mind. That way it is not forgotten and could be opened and looked at whenever I wanted … but kept separate to my scoliosis. As simple as that might sound, it is this method of remembering all the good things and being grateful for them and then putting them out of my mind and separate to my condition that continues to help me to this day. It is without doubt the turning point that makes me able to view scoliosis in a completely new way. So what is my definition of scoliosis now?

Life changing.

Yes, it has changed my life in ways that I have not wanted it to and yes, this has been indescribably hard at times but just because I had to stop something that I loved didn’t mean that I wouldn’t go on to do something that I loved just as much. I love university and I’ve just had the most amazing time studying in Lyon for 5 months; things I would probably never have done. There is no point thinking about, or dwelling on, what could have been and thanks to the NHS and their physiotherapists and surgeons I am perfectly at peace with my piece of ‘bad luck’ seeing instead my luck and being a much stronger and happier person thanks to developing scoliosis.