Living with scoliosis

Before the doctors told me I had scoliosis, I had never heard of this term before. I think most of the people today have heard about scoliosis or know what it means. But for the people who don’t know or who just want more information, here it is:
This will be based on my personal life.

What is scoliosis?

People with scoliosis have a sideways curve in their spine. Most curves have an S or C shape, mine is more of a C shape. A curve isn’t always just horizontally, but some spines also rotate a bit. This can lead to one shoulder blade sticking out more than the other (which can make it very difficult to sit comfortably in a chair, by the way).

How can you get scoliosis?

They don’t really know yet, the genetics are pretty complex. But if a member in your family has it, you are more likely to have it too. My grandpa has severe scoliosis, and if I ever get children, there is a chance that they might have it too.

But a lot of people walking around have some type of scoliosis. Some only have a curve of less than 10° and will probably never even know that they have it and will not feel any pain. Others have a big curve at a young age. I also know some people who have a small curve and unfortunately feel a lot of pain.

How did I find out that I have scoliosis?

When I was 13, my joints cracked a lot when I moved them and my mom was a bit worried about that. So we went to a hospital just to get a check up and see if everything was fine. The doctor said that there was nothing wrong with me, but that he wanted me to get an x-ray taken of my torso. When the x-ray was taken, he saw that I had a 12° curve in my spine. He told me I had scoliosis, but that I didn’t have to worry much because it wasn’t very serious. I just had to come back next year to see if it had gotten any worse.

When we got home that day I immediately googled scoliosis, which is never a good idea when it comes to diseases or handicaps. On the internet you mostly find the worst cases. So I read all about these surgeries which are very heavy and take long to recover from. We stopped googling it and for the rest of the year, I didn’t really think about it that much.

Then 1 year later we went back, took another picture and my curve had gone up to 24° (the double!). The doctors said that I had to wear a brace as fast as I could, or it would only get worse. We made the brace that day and when I sat in the car I couldn’t hold back the tears. I wasn’t prepared for this and I didn’t want my curve to get any worse.

What’s living with a scoliosis brace like?

I think we went back a week later when the brace was finished. You have to wear a scoliosis brace 23 hours a day, you can only take it off when you shower, or when you’re exercising. I had to go to a physiotherapist 2 days a week to exercise my back. The brace was holding my spine, so if I didn’t exercise, my back muscles would lose their strength.

It was a lot getting used to. It’s very frustrating when you suddenly can’t do the simplest things in life anymore, like tie your own shoelaces and such. In the beginning I couldn’t move that well and bending down was difficult. Going shopping wasn’t fun. It never really was when I was really little, just because I’m very skinny and tall. But with that brace around my torso it was even more difficult finding fun clothes that fit me. Wearing the brace did have an impact on the way I acted, and my mom said I looked less happy during this time in my life.

In school I had an amazing group of friends that helped me get out of my brace when we had PE (physical education) and they didn’t really look at me any differently. Of course there were some people who felt the need to comment on my brace or that did ‘knock knock’ jokes with my brace (which may sound funny, but I absolutely hated it), but for the most part I didn’t get bullied for wearing it.

I’ve had 2 braces and had to wear them for 2 years in total, which isn’t that long for a scoliosis patient. It has been 4 years without wearing a brace, and although those 2 years of wearing them felt very long while they were happening, it feels like nothing right now. I had to stop wearing the last brace because I wasn’t really wearing it that well the last 6 months (It’s a long story, the first brace wasn’t a good one and we had a lot of trouble with one hospital so I was a bit upset) and my curve had stopped getting worse.

Scoliosis xray
This is an older picture of my spine (2013), but my curve is pretty much the same.

Right now I think my curve is at around 42°. Normally they perform surgery on people who have a curve of 40° or worse. But because I have never really felt a lot of pain, they don’t see the need of performing surgery, because it’s pretty drastic.

My next appointment at the hospital is in 2018, I’ll be 20 years old at that moment. And even though the last couple of years I’ve only gotten good news, it’s still very stressful every time we have to go there. My curve is still pretty bad and if it gets any worse, it could be dangerous for my organs or for when I’m older.

But at the moment I’m not really worried and I see myself as a very lucky person for barely feeling any pain.

So, there you go, a bit about me and my curvy spine.

Have a nice day/night!

Sarah

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