diagnosed with scoliosisDo you remember how you felt when you were diagnosed with scoliosis?

It’s scary not knowing why this is happening. Feelings of helplessness and frustration to correct what is wrong puts us into a codependent relationship in which we hand over our power to our care provider. We expect them to be the expert when really, they are the student of ours. And in the midst of seeking to understand this condition, somewhere in there is this simple fact that becomes the most life-altering of realities: “I have scoliosis”. This realization has the potential to define the way we view ourselves and live our lives.

What concerns me about this

I unknowingly adopted this diagnosis into my identity. Scoliosis is a condition I have, and the belief in my head is that nothing can change this. The thought of any change – positive or negative – is scary. I subconsciously hold onto what has become familiar because the initial trauma in navigating this condition swayed me so far down the dark abyss of uncertainty that now, the best I can hope for is for things to stay as they are. And without it, who would I be? Would I have higher feelings of self-worth? Would I feel entitled to deserve more out of life? I don’t know.

After going through many checkups where the curves progressed in severity my mantra became “I just want it to stop. Please, stop getting worse.” And as I got older the mantra shifted to: “is it getting worse?”

These thoughts do nothing to serve me. If anything, they hold me back from improving my condition and keep me stuck in the negativity of maintaining what has manifested.

Could you imagine your scoliosis going away?

I absolutely could not imagine having a straight spine. It seems unfathomable to me. This may be because of how my specialists treated me when I was diagnosed, or from an ongoing sense of powerlessness after wearing braces, having surgery and continuing to see the progression in my thoracic spine.

And now that I’ve gotten through the hardest part of the journey and see how much strength I’ve built, the condition becomes my blessing.

So, where does that leave me now? The same state of confusion I was in when I was 13. Still wanting answers, still working hard to manage my condition. And realizing this body type is not cheap and the wellness habits that work for me are not covered by reasonably priced health insurance.

Association between scoliosis and pain

There are many people who suffer from scoliosis pain. There are also people with scoliosis who do not have pain. Isn’t that fascinating? How can one person with scoliosis be impacted to the point of needing to retire with disability and another person can go almost un-phased?

I don’t like associating my back pain with my scoliosis. There’s some deep-rooted fear in there that I have yet to uncover, but on the surface level I think there’s a realization that my scoliosis likely won’t go away, but the pain is optional. With pain, I have some control. What I mean by optional is there are things I can do to address and eliminate the pain, but I can’t say the same for my spinal curves.

Talking about the victim side of scoliosis is hard for me. I wish it wasn’t, but I am really struggling to write about this because I don’t like to think of myself as a victim. I have risen above it! Right? Hmmmm…

My scoliosis is a part of my everyday existence whether I want it to be or not. Any hesitation before trying something new, this is on my mind. I wish I could grasp this as a ridiculous concern. I am reinforced with metal. I’m an enhanced human! My body has been made more solid, not less, so why do I treat it as if it were so fragile?

At this point, I am still caught up in the identity aspect of this condition. My scoliosis is a part of who I am. It has been in my awareness playing a very heavy roll. And my story is not unique. Quite the opposite. I’ve heard so many stories like mine and it breaks my heart. So many girls, just trying to get through being a teenager. Their concerns should be of getting up the nerve to talk to that cute boy in Algebra class. That girl is learning a very large life lesson of what it’s like to feel out of balance with their own body. That girl is finding her strength at a young age.

The progress I have made

In this moment, and for some time now, I no longer have concern for the degree of curvature in my spine (in particular, the unfused curve that is doing its own thing). I no longer focus on my spine in isolation, as if it requires more care than the rest of me. I have shifted gears to spread the love to my muscles, joints, appearance and how I feel as a whole. I strive for mind-body balance. I spend more time getting into my body through yoga. I use this information to understand my world and the role I am playing in it. Life is getting deep, let me tell you. Deep. And it’s more fun that way.

The more meaning and purpose I find, the more I appreciate those special little moments of simplicity and joy.

My body serves me. Period. In a mindset of gratitude, I am so thankful of all of the marvelous things it does for me every day. I also think it gets agitated and communicates a desire for change. I’m still working on this. These are lifestyle changes which require patience and persistence. So I am learning a gentle kindness. The kind I seek from others is what I want to bring to myself.

How do you view your scoliosis story? Does it weigh you down or bless you with strength? Or are you like me, figuring it out day by day? :)