Things I Have Learned From Living With Scoliosis

Six lessons I learned the hard way that will hopefully make the scoliosis journey of others a little easier

My old scoliosis brace that I recently redecorated

Someone recently asked me “What do you wish you had known when you started your scoliosis journey?” and it got me thinking. For those of you who don’t know, scoliosis is an abnormal curvature of the spine. This means that instead of my spine being straight up and down as it should be, it looks like a big backwards S.

Yup — I am officially twisted.

My family doctor spotted my scoliosis during a routine physical exam when I was 12 years old. I was immediately taken to get x-rays (the first of many, many more to come in the next four years). We discovered that I had a 38-degree curve in my lumbar (lower) spine, with a compensatory curve in my thoracic (upper) spine.

Suddenly, my entire world changed and I was not remotely prepared for it. I’m still dealing with the fallout of it all to this day — 26 years later.

So what do I wish I had known back then?

Here are six lessons that I learned the hard way:

1. Ask questions!

At 12 years old, I was a timid little mouse. After my initial diagnosis, my life became a whirlwind of specialist visits and x-rays. This also included being molded for a plastic torso brace that I would have to wear 23 hours a day until I stopped growing and my curve had stabilized. If I didn’t comply, I was looking at spinal fusion surgery … which absolutely terrified me. It still does actually.

Nobody ever thought to explain things to me further than that. At all of my subsequent appointments over the years (and there were a LOT), everyone talked about me but no one talked to me. It was such a confusing time and I didn’t understand a lot of what was happening to me. In hindsight, I wish I had thought to speak up more. It would have saved me a lot of emotional trauma down the line if I could have just fully understood exactly what was going on and why. Don’t be afraid to ask questions. You have a right to know what is going on with your own body.

2. Exercise those core muscles!

This is probably the most important lesson I’ve learned. Having a strong core is so important.

I am not a physically fit person. I never have been. Exercise has always been something I avoided whenever possible. Over the last several years, I have been struggling with chronic back pain. I tried every single avenue I could think of to ease my pain (including several visits to my doctor, desperately pleading for help) but nothing worked. A couple of years ago I was at my wits’ end and I finally decided to try seeing a chiropractor. It turned out to be the best decision I ever made.

He immediately gave me several exercises to follow at home. He also told me that my best defense would be to strengthen my core muscles so my spine would have a little more support. I have to note that this is also an ongoing journey — don’t get complacent! You have to keep your core strong. This is a lesson that I am still constantly reminding myself about.

Which leads me to my next point ….

3. Chiropractors are not the devil.

For years, people kept suggesting I go see a chiropractor to help with my back pain but I always adamantly refused. No way was I letting someone mess with my spine! It has enough issues all on its own thank you very much. In truth, I was slightly terrified of the thought that something would go horribly wrong if I let someone manipulate my spine in any way. It took me getting desperate after I’d tried every other possible solution before I would even consider it.

I finally did some research and found someone who turned out to be a perfect fit for me … and I think that is the most important part. Do your research first. Don’t just go to any old chiropractor. Find one who understands your condition and works around it. Also, chiropractic care isn’t the best choice for everyone and that’s okay. We are all different.

I’ve been seeing my chiropractor for over two years now and I go consistently (every two weeks). I can’t even begin to describe what a difference it has made to my daily life. It may not take the pain away completely, but it definitely helps.

Bonus: every time I leave his office I feel much more flexible. I can move again!

4. Accept that scoliosis is a life long condition. Stop trying to wish it away and/or pretend everything is normal.

There is no cure for scoliosis. Full stop. There are treatment options and pain management techniques but there is no magic cure that is going to straighten my spine. It has taken me a very long time to accept this fact. I have spent years struggling to come to terms with my condition. Sometimes I get incredibly frustrated and disheartened. Living with the pain and discomfort that scoliosis causes day in and day out is utterly exhausting (both physically and mentally). Sometimes it simply gets to be too much.

My epiphany came when I finally accepted that this is who I am for the long haul. No matter how much I want to have a normal, healthy spine, that’s just not in the cards for me. The moment I accepted this, my entire perspective instantly shifted. I can’t change my spine so I have to find a way to work around it. That means knowing my physical limitations and not pushing myself past them. It’s not remotely worth it and I’ll only end up paying for it later. Sometimes I need to sit down and give my spine a break … and that’s perfectly fine.

I may need to make certain accommodations from time to time, but I’ve learned that I can live with this condition and not let it completely define me.

5. Find people who truly understand what you are going through and reach out to them whenever you need to.

Unless they live with the condition, it’s really hard for most people to truly understand what it’s like on a daily basis. One of the things that I’ve found to be incredibly helpful in the last few years is online scoliosis support groups.

For so long, I had been dealing with this alone. Suddenly, I had an entire community at my fingertips. People who understood exactly what I’ve gone through over the years and what I am still dealing with every single day. That has made all the difference for me. It’s amazing how much the knowledge that you are not alone in your experiences can impact you. Talking to people who can relate to what you live with day-to-day and the emotional effects it has on you can be a tremendous outlet. I only wish I had found them sooner.

6. Don’t be ashamed of your scoliosis journey — embrace it!

I spent a lot of years trying to pretend that I was perfectly normal and that nothing was wrong with my back. I never talked about my scoliosis to anyone if I could help it. I mentally denied all the years I spent encased in the plastic cage that was my brace because whether I realized it or not, it caused me a lot of emotional damage.

Imagine being 12 years old and starting middle school. That’s already a hard enough transition to make for any kid. Now add a twisted spine and a plastic body cast to the mix. I spent so much of my life being ashamed of that brace and trying to hide the fact that I wore it at all. Emotionally, I think I wore it long after I physically took it off for the last time.

I’ve struggled for years to try to come to terms with that period of my life and its long-lasting emotional effects. What I finally learned (through a lot of research and support group discussions) is that my journey with scoliosis is nothing to be ashamed of at all. I didn’t choose to have this condition. It is not my fault.

Although wearing that brace for four years as a teenager was no picnic, I don’t regret it for a second. In the end, it ended up reducing my curve by five degrees and kept me from needing spine surgery. It also made me a much stronger, more resilient person. It took me many years to acknowledge just how much strength I gained from the whole bracing experience.

I am a scoliosis warrior! … and I’m finally embracing that fact wholeheartedly.

Scoliosis is a tough condition to live with (especially since every case is different) but there are constantly new innovations. Since the time of my diagnosis 26 years ago, there have been so many new treatment options discovered. Certainly much more information is also readily available to the general public.

This gives me hope that someday there WILL be a cure.

If any of the lessons I have learned the hard way can help someone who is just starting on this life-long scoliosis journey, then it was all completely worth the struggle.

At the end of the day, my biggest insight is this: just be yourself. You will find a way to live with this condition and it does not have to define your entire life.

I am a 38 year old dreamer who is living with Scoliosis. I’m an avid reader and a total nerd at heart. I like to share my thoughts on things.

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