Scoliosis and Identity
Do you wonder what it’s like living with scoliosis or what it’s like for other people who also have scoliosis? Scoliosis is one of the trickiest conditions because of what it does to the mind. Pretty much everything about the scoliosis journey feels like a weird riddle that, no matter what you do, never seems to get solved. And what’s worse, is it becomes a part of our identity. I have scoliosis. I define myself as someone with scoliosis. But is scoliosis who I am? Of course not. Has it shaped my life and how I see myself in the world? Absolutely.
The Scoliosis Mind
In talking with other people with scoliosis, there’s an internal struggle between how we see ourselves and how we feel the world sees us. Most people can’t spot whether or not another person has scoliosis. It’s just not something that gets noticed – which speaks to why checking for it during growth years is so important, because it is that easily missed to the untrained eye. Then we have those of us who become very self-conscious about the unevenness caused by the condition. In all cases, it feels like a hit to our sense of beauty (as women) and strength (as men).
Since it can be so easily overlooked, and to most patients, it is a surprise diagnosis, why do we get all worked up? It’s the uncertainty, the unknowing that makes it so difficult. Being told your spine curves and rotates and they have no idea why… that FREAKS US OUT. Then you have the cycle of ‘Why is this happening to me? Am I ok? Yes, I’m ok. But am I really ok? Is anyone ok? I guess I have to live with this, so I’ll make it ok. Ugh, I’m not ok…’ And then add to that the people who have pain because of scoliosis. What is a person to do?? And then the depression and feelings of helplessness settle in and stay a while. It gets rough. Next are the isolating thoughts that drift into the head of “no one understands” or “I don’t want to be a burden”. You start to see just how deep the negative thoughts can get and where the seeds of lies are planted.
The Scoliotic Body
So that was the mind, let’s not forget the major offender: the body. The body is immaculate in its ability to survive. So it’s doing its thing the best way it knows how. And the mind is like “What are you doing??? STOP. NOW! Please?” And then we are at odds with ourselves. The mind begins to distrust the body. And now we are out of balance.
The difference between right before a diagnosis and right after a diagnosis is awareness. And it comes as an ill-informed awareness because there is no identified cause. So any and all attempts at treatment are guesses. And in cases like mine, the guesses don’t work and it becomes a path of health issue, after health issue, after health issue, until finally it all comes together and makes sense. It’s a very long road of tears and frustration, and I am one of the lucky ones! I consider myself lucky to have gotten to this place where my body and my mind have finally, (FINALLY!) come back together.
What Doctors Say About Living with Scoliosis
What I find interesting is what the doctors advise on how to live with scoliosis. The advice given to me was to be a normal kid. Isn’t that extraordinary? My surgeon wasn’t concerned at all about ongoing care throughout my adult life. And that may be the exact response that is holding us back from real progress in this area. But I don’t want to dismiss a physician’s standpoint because it is very telling. It tells me that this is a livable condition. One can live well if they manage their scoliosis. It is not dier. It is not life-threatening. So what is it? The answer is, it’s up to us.
It took a hitting rock bottom for me to get on the right path. I hope to help you get to that place too. Not the rock bottom, just the helpful healing part :) You can get there! And there is no such thing as too late. With scoliosis, we do have options. Some fast and easy, some slow and challenging. But the body is so good at change. We just need to know how to shift the steering of the ship to point it in the direction we want it to go.
Here’s a Peak Into My Curvy Girl Day:
I have said a lot without saying much at all. And I really don’t like that. Scoliosis is a complex condition in terms of what causes it, but the treatment can be simple and I believe the right treatment always is. So I won’t get too specific on exact treatment solutions because of bio-individuality. I wholeheartedly believe adopting a scoliosis treatment lifestyle can stop the progression, and under the right care, can even yield reduction in curve size. The key is in understanding a patient’s unique needs to come up with the right combination of nutrition + physical exercise + emotional healing to guide them to the place they are wanting to be: healthy.
If you’ve recently been diagnosed with scoliosis or have a child with scoliosis, what questions do you have for adults living with it?
