Helen has lived with scoliosis since she was a teenager. At our patient event, she came looking for answers about managing scoliosis as she gets older. What she found was much more than that.
Here, Helen shares her story in her own words.
A diagnosis at the beginning of my teenage years
Enthusiastic jumping in waves, on a pebbly beach, resulted in a chipped heel bone and an unwanted visit to Casualty, a heavy plaster cast and a diagnosis of mild scoliosis. This was in 1967 and my teenage years were just beginning.
My aim was to look like Twiggy. I ignored my mother’s urges “to stop slouching”, but other people’s comments about my style of walking, one hip definitely out of line, penetrated.
Years later, my mother apologised for “not doing anything about my scoliosis”, but what could she have done? This was a question I took with me to the patient event. She would have been relieved to hear the specialist’s answer: back in the late 1960s, it was probably best that I was left alone.
My father, a civil engineer, pinpointed the heel injury as the likely cause of my scoliosis. The patient event questioned his conclusions, as I learnt that mechanical trauma is very unlikely to be a cause of scoliosis and that genetics plays a part.
Interestingly, I had discovered that a Victorian great uncle of my father had “curvature of the spine” recorded on his death certificate.
Taking control of my own body
Another unexpected encounter with the medical profession, aged 18, fired up my determination to be in charge of my own body.
I was attending a medical for entrance to Teacher Training College and was told I wouldn’t pass because of my scoliosis and heart murmur. The latter was an unwelcome surprise.
I pleaded with the doctor not to destroy my future plans, and thankfully I was heard. I promptly chose to go to university instead!
It wasn’t until forty years later, when my back was paining me enough to seek medical help, that I realised I had now left behind the initial “mild” diagnosis to one of a more significant curve.
Finding answers at the patient event
I came to the patient event chiefly to learn about the management of scoliosis in the ageing spine, but I also wanted to tell my teenage self, and I saw her sitting there in all the rows of teenagers and their parents, that things would be OK.
Despite scoliosis, life would be full of adventure.
I did manage to hold down a teaching job with young children, which was physically demanding. I grew to love my body’s strength despite its shape.
Although I made sure I had a super tailor-made dress that disguised my scoliosis for my first son’s wedding!
I have three sons, including twins, who I had when I was forty. I was fascinated to learn from a specialist at the event that pregnancy may develop scoliosis curves. This could well have happened to me, but these sons were a longed-for blessing.
A life full of adventure
I have climbed mountains, hiked over black ash Icelandic desert and cycled long tours in four continents.
“Keep moving” was the mantra of one of the specialists at the event and was the main takeaway for me.
I realised I had been on the move all my life. I swam every night after school as a teenager, cycling home ravenous, and I still cycle. It is my freedom and my joy.
I love to dance, though my teenage self may be embarrassed by the spectacle!
I know that all this could change, but I am so grateful that I can still move out into the world and have adventures in my seventies.
“I wanted to tell my teenage self that things would be OK, that despite the scoliosis life would be full of adventure.”
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Help someone find the support they need
For someone living with scoliosis, having access to the right information, support and people who understand can make a huge difference.
This Christmas, you can help make sure no one has to face scoliosis alone.
