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.

Being diagnosed with scoliosis

When I was 15 years old I was diagnosed with idiopathic scoliosis. A shock for anyone but for me an absolute blow. It not only had consequences for my day-to-day life but also for my chosen career. Yes, at 15 I knew actually what I wanted to do with my life. In fact, I’d known since I was 8. I was going to be a ballerina. I know this is the dream cherished by most little girls but I was blessed with a real talent and an inexhaustible passion for dance.

I endured the gruelling process of auditioning for the top ballet and theatre art schools and witnessed first-hand the highest degree of pushy-parent-syndrome. After a harsh pep talk 10 year old girls with fear of failure in their eyes were shoved into the auditions, their parents “this is your LAST CHANCE” ringing in their ears. For me, it was meals at Bella Pasta, practising in the small hotel room and eating Thorntons chocs snuggled up in bed before an early night; looking back I now realise just how rare and charming this is. It was all an adventure that I myself had chosen to be on and my parents were there, as they always have been, telling me “just do your best, we love you.” Despite getting through to the final audition stage for White Lodge I did not receive a place – and I will never forget that, my first taste of failure. I did however gain one of the 11 places for Year 7 students at Elmhurst School for Dance. I spent 5 years at Elmhurst and my memories of it are certainly bitter-sweet.

Attending a school like Elmhurst, a boarding school, but not your average boarding school, not a ‘normal’ school, is an experience I will never regret. The opportunities were incredible; I was chosen to tour with the English National Ballet’s new production of the Nutcracker dancing in Bristol, Manchester, Southampton and London at the London Coliseum. All before I was 16 years old.

When school uniform is a leotard, studio walls are lined with mirrors and long finger-nailed teachers prod and poke every inch of your posture, my scoliosis was detected very early on. Only 11 degrees and some pain which the physio said was just growing pain; it was nothing to really worry about. I was even told that a dancer in the Birmingham Royal Ballet Company had a curve of the same degree.

I was not to be so lucky.

With the schools own physio and having Bupa private health care (another perk of being registered at the school) you might think that my treatment would have been smooth and caring. Unfortunately I only have bitter memories of both.

The physio told me it was my fault the curve was worsening and that I was making up the pain.

I could barely hold my left arm above my head let alone complete a whole ballet class.

I was put ‘off dance’ by the Sister to try to reduce the pain and eventually I had to accept that this would be permanent. This perfectly coincided with all my friends preparing and auditioning for sixth forms at all the top dance and theatre arts establishments. It was hell and I wasn’t allowed to get away from it. I was made to sit through every single dance class, taking notes and could be called upon by the teacher at any moment to repeat what she’d said or give a friend a correction. I never confided in any of my class mates how hard I found this and will always bare a scar from when one called me a ‘quitter.’ It was never an easy environment to grow up in but before I had always shared the experience with others. For this I was completely on my own. I felt I’d failed and I’ve never cried so much on my own at any other point of my journey with scoliosis. It was awful, I do still feel cheated and my slight vendetta against all of you who have perfectly formed and functioning spines will never go away. Do you realise how lucky you are?

Bupa refused to continue my health cover when I left Elmhurst as it seems that when you might actually need them, they turn you away. Even to this day I grimace at the Bupa care adverts promising the world when in reality if you bare a medical condition which may need help Bupa ‘health care’ do not, well, ‘care’.

But with that I became an NHS patient and that is what my blogs will cover. This is about me, my scoliosis and the NHS.