My Scoliosis Journey: A Secret Struggle

After the initial diagnosis of my scoliosis at 14, I was monitored by an orthopaedic specialist over the next few years – thankfully my scoliosis didn’t get any worse.
But the psychological damage did.
You would be surprised at how much having a twisted back affects your self-esteem, especially as a teenage girl.
I felt ugly and deformed; I spent all my time in large, baggy clothes – wearing a size 12 when I was a size 8 to hide my rib hump.
I’ve lost count over the amount of times I burst into tears over how I looked.
How many times I saw my back in one of those three-way mirrors in changing rooms, or a photograph and just wanted to cry.
It’s funny; before I was told about my scoliosis I was proud of my body, now I just wanted to hide it.
I hated summer and holidays the most. I longed to be like the other girls on the beach, able to wear little vest tops and bikinis without feeling self-conscious. I was young and slim; I should have been showing off my body not hiding under baggy clothes.
Every year when I went to see the specialist I just wanted to scream out ‘please just fix my back’ but I was too scared of the risks and my parents were dead against the surgery, worried I would end up worse off.
They didn’t realise how much I suffered psychologically, how I constantly looked at other people’s backs and wished I looked like them.
I knew the curves were bad but I buried my head in the sand, I just didn’t want to deal with it so I convinced myself they would never get worse and I tried to get on with my life.  I went to university, went out clubbing, got a boyfriend, had nice holidays. I just wanted to be normal, enjoy myself for a change. 
All the while with this hanging over me – always in the back of my mind.
I didn’t tell anyone about my back, my friends at uni, not even my boyfriend. I was too ashamed.
In a way, I think this made it worse as I had no-one to talk to. I became withdrawn and unsociable. If I only I’d have had the courage to talk to my friends about it I would have felt so much better, I know this now. But sometimes it’s hard to actually admit you have a condition and deal with it.
From bad to worse…
When I was 21 the pain started.
Three years of drinking, partying, eating junk and lack of exercise whilst at university had taken its toll on my back.
I developed excruciating muscle spasms around my curves as the muscles struggled to support my curving spine. I also started to suffer from painful pins and needles and numbness in parts of my back from the curve pressing on my spinal cord.
I tried everything to get rid of the pain.
First was the NHS physio, which in my opinion was a complete waste of time. In my experience, the NHS physio’s I saw  didn’t seem to know what to do with people who have scoliosis. A few weeks of stretching exercises and I was “cured” and sent on my way, still in pain.
Determined to get rid of my pain I tried acupuncture, swimming, took Pilates classes and joined a gym in an attempt to get fit and strengthen my back. I even resorted  to paying privately for more physio, which I really couldn’t afford. 
The weekly massages from the private physio as well as the exercise helped to manage the pain, but it was always there.
For the next couple of years I was miserable, I felt deformed and was in pain.
To make matters worse I started researching scoliosis on the Internet, and was distraught at what I was reading. Scoliosis did get worse. Especially severe scoliosis like mine, in fact it could progress by 1-2 degree a year due to gravity pulling on the spine. I also read that the strain placed on the back during pregnancy and also the menopause could cause scoliosis to progress.
This was not what I had been told by the specialists I’d seen in the past, in fact, they gave me the impression that once I’d stopped growing it wouldn’t get worse.
The worst part was that I read that if it progressed so far it could have serious consequences as the twisting rib cage could push against the heart and lungs causing physical damage.
I began to read stories on forums about people with untreated scoliosis that had progressed so much they were on oxygen to help them breathe.
As you can imagine I got myself into quite a state reading about what could happen to me if my scoliosis was left to progress throughout my life.
I became depressed and felt that I had nothing to look forward to in life – either a horrific operation or let myself become more and more deformed, potentially compromising my health.
I tried to convey my worries to my parents, but it usually ended in a row, with them telling me to stop reading things on the Internet and to believe the specialists we had seen.
The more stories I read though, the more I believed that it would get worse.
These were real people, all with similar stories, discharged as teenagers only to be having surgery in their 40s after their curves had progressed during the menopause.  

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