Tangled in Our Curves — by Caroline Bell

Our tenth TOPS 'Back Stories’ guest blog feature writer is Caroline Bell, author of Tangled in the Curves. Caroline chronicles her “scoli saga” below, and shares how her world started to crumble with a diagnosis, but over time she gathered the tools and information to understand “I am not my scoliosis - and neither are you”.

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My scoli saga began when I was 13 years old - before I even had scoliosis! Day after day, no matter what I did or did not do, I started having searing, screaming pain in my neck and shoulders. What a way to go through middle school! What was recommended to us exclusively? Chiropractors, massage, swimming, and non-scoliosis-informed yoga. There was no mention of scoliosis possibly developing.

Two years later, under the unfortunately-not-so-watchful-eye of a care team, my parents discovered that scoliotic curves had joined the party - two of them at above 30 degrees.

What was recommended to us exclusively after a set of X-rays confirmed the diagnosis? Chiropractors, massage, swimming, and non-scoliosis-informed yoga. Oh, and a brace to try and slow it down!

My world didn’t fall apart immediately, but slowly it began to crumble. The worry, fear, sadness, and anger that this was happening to me started building up - my spine was seemingly out of my control and certainly not my fault!

And yet, like the good patient I was, I did it all. All of it. The multiple appointments after school each week, the sticking to my exercises, the diligent bracing, the hiding my pain as best I could, the not wanting to be a burden, the not believing I could ever have surgery, and, inevitably, the shutting down. What a way to have fun through high school!

Scoliosis is hard.

Particularly when you are not provided the proper support and education.

Today I am a young adult with a home, career, multiple hobbies, and overall a very full life. But for years and years I had this scoliosis thing seemingly hanging over my every move. This thing that would pop up to remind me I was asymmetrical, or sore, or weak in some imbalanced spots, or—possibly the worst—different from my peers. It often cast a shadow over me. I had no tools or information to understand what/why/how it was doing this or what/why/how to stop it!

Now, I am still in fact all of those things listed above. But today I have reached a place where I can acknowledge those things about me without them controlling me. I am not my scoliosis, and neither are you. Let me state that again: you are not your scoliosis.

It baffles me a little bit writing about this today, as just a couple years ago I never ever thought it would even be possible to get to this point. But thinking about how little (read: zero) professional scoliosis mental health support I was offered during the peak of my young scoliosis saga, it makes perfect sense! Scoliosis happens to show up most often during an emotional peak of life: adolescence. A lot is going on during those years - mix in body image and being different, it can be a recipe for disaster.

As I began my self-imposed journey to get control of my scoli situation during adulthood, I was simply startled by my initial research: there were still very few holistic resources out there to support a scoli saga. The scoli families were asking the same questions mine did over a decade ago. All of the support groups I joined had groups of women carrying grief for years, sometimes decades. Scoli kids were still being given the “wait and see” approach.

“But it’s been over a decade, surely things have gotten better? Surely there is some kind of guide for what to expect? Surely people must know they’re not alone in silently enduring these curves?”

Rather than sit in baffled awe, I decided to contribute. I spent months and months researching and interviewing scolis of all ages/parents/doctors/practitioners to write the book that I believe would have helped me through the diagnosis years (and as a paper friend through scoli low points in adulthood). I vetted every section with at least one other scoli to confirm the feelings and situations captured within rang true, in the hopes that this cute little book will make it easier for others on a similar journey.

Tangled in the Curves - Real Life with Idiopathic Scoliosis covers it all - from diagnosis, bracing, surgery, and life beyond with a curved spine. It is intended to celebrate the strength of curvy patients, support families who are new to it all, and kick start conversations with healthcare professionals about the need for education and support throughout the saga. More information, upcoming speaking events, and where to order are available here.

Back in the day, we were gifted this curved back and pain, told to do a couple of things, and were sent on our way. Thankfully - thankfully - that is slowly going the way of the dodo. Emotional support in many forms has started accompanying the scoliosis diagnosis - whether online (check out Martha’s support group!) or in person. Psychology has begun to look into the impacts of scoliosis and how best to support young scolis in the heat of it, rather than only tending to adult scolis later on carrying years of pain and grief.

Support is a must, but so is education. You need to know what you’re dealing with! Ultimately, your care is in your hands, and to be a good advocate you need to know what’s up with your back. Do you have one curve, two, three? Where are your dunes and prominences? There’s possibly too much to know… which is where a scoliosis professional comes in handy! Yes, those are a thing now! Shout it from the rooftops!

I mentioned scoliosis-informed yoga earlier. That is an important distinction to make, as most yoga practitioners don’t know about scoliosis - or more likely don’t know how to properly adjust positions for your unique back (Martha, where were you to teach my yoga teachers ten years ago!).

Blindly following general-purpose yoga can force you into bends and twists that are uncomfortable, deepening your curves, straining your fusion, or possibly demotivating you painfully. Same goes for other exercises and workouts. There won’t always be somebody there to tell you how to “scoli” safely, so this is where your scoli education from a scoli professional comes in handy! Personally, Schroth was the school that finally crossed my path and empowered me to move with my scoli, as opposed to against it.

Learn about your back, your body, your breath, and how to use it properly and safely as you move. And yes, you should definitely stay active! Take care of yourself, and your spine.

x Caroline Bell (Scoliosis Author & Patient Advocate)

For more on Caroline Bell and Tangled in the Curves, visit her website here.