The truth of accepting and living with scoliosis: Cailey’s Story
In this guest post, Cailey Tarriane shares her scoliosis story and experiences. Feel free to share your own thoughts, comments and experiences with scoliosis below! If you’d like to share your own scoliosis story, please contact me.
Believe it or not, scoliosis was manageable for me on some days. I wore a brace to school, skipping PE. Woo-Hoo! But it made me feel like a freak. I found a way to turn my condition into something funny, for my friends to laugh with me about. Not laugh at me, a thought I’d shiver at.
But truthfully, scoliosis isn’t humorous. Like when my hair gets stuck at the back of my brace. Or when I thought ‘progress’ meant a good thing, but it turns out that in scoliosis X-rays, it’s quite the opposite. What am I doing wrong? Did I deserve all this?
Or when a part of my brace got too tight and started hurting me. So I pulled and pulled until it broke (It turns out that brace needed serious adjustment.)
The harsh reality is that when I first got diagnosed with severe scoliosis at age ten, I expected the cure for it to be.. Motivational. The type of life story that you watch unfold on TV, knowing the main character gets happily ever after.
My hope was crushed. It was too.. happy. And unrealistic.
First of all, there is barely a cure. At least not the type one would initially expect. Bones aren’t easy to fix. You don’t push a muscle and say, ’hey! Move so that my spine can straighten up!’ It’s hard. It takes endurance. You learn a lot. You grow. And that doesn’t even guarantee you’ll get better, so don’t depend on that. Instead, hope for joy, hope for living your best life, with or without scoliosis.
Don’t let it hinder you- one of the mistakes I’ve made. All I was thinking about after receiving my X-ray was,’’When I wear that ugly brace, I can’t do this. I can’t do that. My life is ruined.’’
A natural impulse for a melodramatic ten year old. My scoliosis at the time was moderate, meaning I didn’t have to get surgery. Not right away, at least. My parents knew a friend who was confident about my spine returning ‘back to normal.’
So the idea of a massive cure lingered in my mind. The type of treatment I had with that family friend was.. Unusual. Extremely painful. For the sake of people who get easily triggered, I won’t describe it. The friend kept feeding me ideas of how well my scoliosis could get. I, a child at that time, became complacent.
I didn’t wear my brace because people made fun of me and I said,’’I don’t like it. Besides, the (friend) said scoliosis can get better without ANY brace.’’ Which is very subjective.
The exercises I did were light; fifteen minutes or nothing in a day. All that was in my head is that this (friend) said it’d get better with their treatments, so I don’t need anything else. Wrong!
I fought with my (loving) parents about how much I’m disciplined. I didn’t mean to hurt them. I was frustrated and angry, with the decision that nothing else I did would make my scoliosis better. I’d stare at my back in the mirror before taking a shower, looking at the hideous hump. And imagining what it would look like if a certain bone stopped protruding.
I still did this after I got the worst X-ray of my life. It was a year after my first treatment with the family friend. I thought my back improved- even by a lot! Many sacrifices had been made for those treatments, including but not limited to: time, gas, money, and a recent addition..
No improvement. And worse: my curve got bad by a lot.
My ‘moderate’ scoliosis has now upgraded to ‘severe.’ Naturally, I stopped seeing the family friend after no explanation (but I do forgive them, that was a long time ago.) The panic of the week of that horror X-ray brought a change of plans in treatments.
I was too young for my back to start hurting- but one of the ways to prevent this was exercises. Which meant hiring a physical therapist. And a chiropractor (a doctor who treats the spine using their hands.)
Shortly after the shock of my X-ray (and a lot of tears) wore off, it was a new chapter of my scoliosis journey.
Juggling school with all the new treatments was a massive struggle. There wasn’t afterschool time to hang out with my friends. Time was out of my hands; I felt helpless. People don’t talk about mental health with scoliosis a lot, but in many ways, I was grateful. Grateful for loving parents, who booked me three sessions of physical therapy in a week.
My PT (physio/physical therapist) was a great person, but I’m going to admit that liking them was hard at first. I’ll own up to the fact that the exercises made me cry and I was lazy. (At first, now I’m great at those exercises!)
I had also been seeing a chiropractor. I was afraid he’d break my neck, but he was a lovely person. No necks have been broken. On nights where my back hurt me, I’d give myself ‘chiro’ because my poor chiropractor suddenly fell sick. Because of this, we stopped seeing him after three months.
Note: Please don’t chiro yourself without experience (I don’t anymore.)
So instead, on those ‘harder nights’ I’d tear off my hair in frustration- and rip it off the back of my brace. Because it always gets stuck at this metal thing; I should either keep my hair short forever or let the brace tear it off. But I’m grateful for my brace. Throughout my journey with scoliosis, there’s always something to be thankful for.
Having financial support, family and friends supporting me- even STRANGERS supporting me! Keyword: support. And TIME to exercise- even if keeping it in my schedule proved to be a stressful problem. But my family was sacrificing a lot to let my treatments happen; I couldn’t give up.
My physical therapist was giving me therapy three days a week, but she chose to change this to one day (bless her, she’s a great person.) Why did she do this? To give the other two days to a new therapist she met. This new therapist was a scoliosis specialist! And she could really help me, I was told. Once again, hope for ‘getting completely better’ came into me.
Learning exercises with this new therapist was a challenge. Because the ‘Schroth’ method she was teaching me, a nonsurgical option for scoliosis, wasn’t a piece of cake. They made me dizzy and nauseated, frustrated with the way my body wasn’t cooperating.
Still, I believed. Because I read the social media post about how effective this method was at the SAME time as this therapist came! I thought,’’Wow! This is a crazy breakthrough! I’m going to get better! This is the ending of my inspirational story!’’
I was right and wrong. Right, about this becoming an inspirational story. When I tell fellow scoliosis patients about my treatments, my exercises, the rewards for it- that’s inspiration standing alone. But I was wrong about this therapist making me ‘better.’
The new therapist had a change of schedule at her work. She was getting busier, frequently calling to cancel meetings or forgetting to tell me at all. There was always work she could prioritise over the quality of our treatments; I was just her freelance job, in short.
My family was mad. The therapist was fired. Sometimes I wonder why my parents even bother to support me in ‘curing’ this condition. Because that’s when it hit: there was no cure. Scoliosis is a chronic disease.
And the Schroth method was not my answer. I had been hoping and praying so hard that it was. That’s when my faith in this being my ‘scoliosis recovery breakthrough’ fell. Every time an opportunity that could help my scoliosis was presented, I’d think it’s a sign. Become too excited. Rely on false hopes. Advice: don’t do this.
After that disappointment, I was disheartened for a while. That night, friends came over. They complimented about how ‘toned’ my muscles were. They weren’t even aware I had scoliosis- because I was allowed to take off my brace for a little while.
And I had become reliant on my own discipline with my posture. That’s when it came to me: my hard work was paying off! Why wasn’t I seeing it when I looked in the mirror- instead of seeing a curve-spined freak?
I just needed more of a positive mindset to see it. After that, life went on. I went back to three times a week with my original physical therapist. I wore my brace and made jokes about it. Not to put myself down, but to tell myself,’’this is your normal. If people can’t accept your brace, they’re the freaks- not you.’’
It wasn’t my impractical hopes that gave me a positive attitude; it was the acceptance that scoliosis can’t be cured in the way I was hoping it would. I had been looking for the journey’s ending, when exercising and looking after your posture NEVER ends!
Scoliosis won’t stop being a huge part of my life. The only remedy is learning to live with it, and appreciating what I’ve become because of it. For one thing, I avoided diseases worse than scoliosis by exercising.
Before it became an obligation, I was lazy to exercise, fix my posture, or care about why it mattered. I learned that getting what you want isn’t easy. Preventing further scoliosis progression is a discipline. When I don’t wear my brace, I always check my posture. And most importantly, I learned that even with scoliosis, life goes on.
Thank you Cailey for sharing your inspiring story. I can definitely relate to pinning my hopes on ‘alternative’ methods only to be shot down by my Dr – it should be noted that my scoliosis was very severe (over 80 degrees at the time). It really can be devastating when you get your hopes up though.
In my experiences, physiotherapy and methods like Schroth can cause pain relief and strengthen muscles but, ultimately there is no ‘cure’ for scoliosis. The Scoliosis Association UK is a good resource for accurate and up-to-date information on alternative/complementary therapies for scoliosis. I would always recommend that people with scoliosis get advice from a qualified scoliosis specialist.
It can be so difficult to accept a scoliosis diagnosis, and living with any chronic condition, but I found that once I accepted and embraced my scoliosis, my outlook and life changed for the better.
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I had scoliosis surgery in 2010 and blog about my experiences living with scoliosis. My aim is to raise awareness of scoliosis and help and inspire others with the condition.