what scoliosis feels likeHave you ever wondered what scoliosis feels like or what it’s like for other people with scoliosis? In this post, I’m going to talk through some of the symptoms that I’ve experienced going through life with scoliosis. Scoliosis comes in many forms. I’m focusing on the side effects experienced for mild to severe progression. There are a wide range of sensations that coincide with emotions that I’ve listed below. It can be tough at times, but I promise there is a light awaiting on the other side of the tunnel.

“Scoliosis: because the only one strong enough to kick my ass is me.”

Physical Symptoms

  • Tightness on one side of my body more than the other
  • Muscle tension
  • Strong desire to crack one’s back and adjust
  • Leg pain
  • Dull ache (various locations)
  • Sharp pain (various locations)
  • Lower back pressure
  • Neck pain
  • Hip pain
  • Shoulder pain
  • Stiffness
  • Soreness
  • Fatigue
  • Muscle spasms
  • Numbness/tingling
  • Like my spine is going to break (this feeling is fed by the rotation accompanied by scoliosis)

Emotional Symptoms

  • Self-isolation (I can’t participate because I have this condition)
  • Unsatisfied wishful thinking (Wanting life to be different)
  • Self-deprecation (I’m not as capable as others, I’m not good enough)
  • Relationship insecurity (Do they really find me attractive? Is he settling with me?)
  • Depression (Woe is me. Why is this happening to me? Lack of feeling/caring)
  • Fear of the future (Can I have kids? Will I be in pain down the road?)
  • Body insecurity (I feel/look crooked)
  • Irritability (Lack of patience, misplaced frustrations)
  • A desire for belonging (Searching for validation and understanding)

Why people who don’t have scoliosis struggle to understand it

We insist on being high-functioning.

If you have scoliosis and you’re reading this, I hope that last sentence makes you feel good about yourself because you know it’s true. We operate in the world as if we aren’t struggling or in pain because we feel as though we have to. We have responsibilities, obligations and we are capable, so we push past the pain, fatigue, frustration, and fear. We power through. It’s a bizarre battle in the sense that most people have no clue unless we explicitly talk about our experience. We also don’t want anyone to feel bad for us. I know this has led me to be stubborn in my fierce need for independence. Fortunately, therapy has helped me get to a place where I can ask for, and receive, help when I need it.

This is the hardest post I’ve written so far. It’s hard because I am coming face-to-face with a reality that has raged an ongoing war in my mind for years. Especially when it comes to doing something that has the potential to be physically taxing. The “I can’t do this” followed by the “yes you can” back to the “this scares me” all the way do the “I’m not letting anything hold me back, I’m doing it.” Sometimes everything turns out fine and other times I lay in bed at the end of the day thinking “man, I shouldn’t have pushed myself.” The older I get, the more willing I am to try new things, and that confidence has come from learning that any sort of change feels different. And the good change can feel concerning, but that’s how transformation happens. I have my chiropractor appointments set up so that I get to hit my body’s “reset” button every other week. And sometimes my chiropractor laughs after my adjustment and says “what have you been doing?” Ha, living life my friend, living life.

It’s hard to see the internal struggles when the outside does such a good job of hiding what’s going on underneath. I’d say the best proof of this was when a guy was trying to talk to me at a bar downtown in Chicago a few years back. After chatting for a few minutes he said, “you must have been ugly as a child. How are you so… cool?” He was sincerely baffled by me. It was flattering in the sense that homeboy clearly found me too attractive to be a decent human being, to which I responded, “thank you”. But what he was really saying was he could see that I’d gone through something in my life that left me grounded.

Why I don’t blame my scoliosis for my pain

I never associate my pain with my scoliosis. I always associate it with stress and my diet. When I am inflamed (both triggered by food and stress), my body responds in whichever fun way it feels will get my attention. This is likely in part to self-preservation. I fear I would otherwise lose hope. My scoliosis is constant, but thankfully, my pain is not. This is not the case for everyone. There are people with scoliosis that do experience chronic pain that doesn’t go away. My heart cries out for a solution for these people. Pain is our body’s communication for help and I do believe there is a root cause that is sounding the alarm.

How to treat someone with scoliosis

If you know someone who has sustained scoliosis, treat them with kindness. I would never want anyone to feel sorry for me or treat me like I have a limitation. I don’t like attention drawn to my body in a negative way.

The golden rule: Treat others the way you would like to be treated.

I am a firm believer that we all deserve to be treated with love and kindness. It is the second greatest of all the commandments. Treat others the way you treat yourself. So please, treat yourself well.

The truth about people with scoliosis

We are strong. We are beautiful. We are brave.

We have grown through an experience that has blessed us with a level of empathy towards others that only comes from a journey through adverse circumstance.

While I continue to have insecure thoughts from time to time, I deeply enjoy who I am as a person. In exploring questions like “Who am I?”, “What am I about?”, “What do I value?” And “What kind of person do I want to be?” I’ve been able to find my identity through a purpose-driven mindset and not let what my body does (for better or worse) define who I am.

We all experience a challenging time with our bodies in this life and we have an opportunity to learn and grow from them. How have you grown through your journey? What did you learn about yourself?

 

xoxo,

carlyn porter scoliosis signature