How I Stand Proud While Living With Scoliosis

While I was sitting slouched over my computer browsing the internet, I discovered that May is “Correct Posture Month.” I remembered the words I often heard as I was growing up, “Stand tall, stand proud.” But it was also a reminder for me to sit up properly, do some neck stretches and take deep breaths to fill my lungs and expand my ribcage.

My ribcage hurts. Always. But doing those breathing exercises can actually help the pain. I need to put them into practice more often, so I think “Correct Posture Month” was a timely reminder for me.

People have often looked at me and presumed I have bad posture. Some people, even total strangers, have actually mentioned it. “You need to straighten up,” or “Do you realize you are leaning to one side?” However, it’s got nothing to do with bad posture. I have a condition called scoliosis, a curvature of my spine.

When I was younger, it was embarrassing. I was very aware of my “odd shape” and always felt so self-conscious about it. I had very little confidence in myself and felt as though I stood out like a sore thumb, or in my case, a sore back. Possibly it was a bigger thing in my mind than in reality, but I can’t deny it did have an effect on me.

My scoliosis developed when I was about 10 years old. Our GP sent me to the orthopedic surgeon at our local hospital. He took some x-rays and told my mum and myself not to worry about it. He assured us it would never cause a problem. It was just cosmetic — so cosmetic that he told me to eat lots of Mars bars in order to fatten myself up to cover it.

I took him at his word. I ate lots of Mars bars. And I can confirm that Mars bars do not help to cover up scoliosis.

During adolescence, the scoliosis changed. My pelvis pushed out further and sat higher at the right side. I was still seeing that orthopedic surgeon and he was still telling me it was a cosmetic problem. It became apparent that it wasn’t just cosmetic when I started having back pain as a teenager. By my late teens, I was needing to take painkillers regularly. At that point, life was starting to revolve around my pain. I couldn’t walk far and I couldn’t stand for long. My pain became so severe, I fainted sometimes.

I think I was about 19 when I had an appointment to see that same orthopedic surgeon. He said (and I can quote him precisely because his words are as clear in my head today as they were then), “I don’t really know much about scoliosis, so would you like me to refer you to a specialist?”

All those years and suddenly he decided he didn’t know much about scoliosis.

I was referred to see a scoliosis specialist in Edinburgh. He was known for his work throughout the world. However, he could do nothing for me. I remember my mum asking him if he’d seen me when I was younger, could he have done something. He was very non-committal and said he couldn’t give an answer because he hadn’t seen me then.

I don’t think there would have been a point to an answer anyway, because we cannot turn back the clock. There’s no point in thinking about what could have happened way back all those years ago. I live in the present. I know my Mum always wished that she’d pushed for a second opinion when I was younger, but I hopefully convinced her to stop worrying about it. Back in the 70’s, people didn’t question doctors in Scotland. And he was a highly respected doctor… so why would anyone question his opinion?

His opinion that my scoliosis was “just cosmetic” and “would never cause a problem” obviously was completely wrong. Due to extreme, disabling back pain, I had to take early retirement from work when I was 28. The scoliosis has caused back, rib and hip pain. This, along with other unrelated chronic pain, has dictated how I have lived. I’ve had to give up a lot of things… work, social life, hobbies, even having children. But I’ve still tried to enjoy life. I’ve still tried find things to smile about. I’ve still laughed every day.

I’m now 51 and don’t have that same self-consciousness about my scoliosis. I am aware that most people notice my back and if they comment, I have the confidence to explain. It doesn’t embarrass me now. I do live with a lot of pain every day, but I don’t think my life is bad.

Considering what I live with, I don’t think my posture is too bad either. On the days when I can, I stand as tall as I can — but I always, absolutely always, stand proud.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by Mat Silvan.