Scoliosis is literally a pain in the back. Besides having to cope with constant pain, you have to also have to deal with a deformed body. And what hurts most is having to contend with the insensitivity, ignorance, and rejection of the people who should be the ones propping you up.
This secondary wounding is worse than having scoliosis. The stigma of having this condition adds insult to injury, like rubbing salt to our wound.
Secondary wounding occurs when cruel, ignorant, or insensitive things people say or do when they find out you have some emotional or health issues, without bothering to understand what you are actually going through.
When it comes to scoliosis, most people don’t understand what is really going on. You have to deal with dismissive and many times outright mean behavior. And it hurts worse than your crooked, twisted spine.
How The Hell Did This Happen
Adolescent idiopathic scoliosis begins very unobtrusively. Anyway, I was too busy trying to cope with so many emotional issues in my chaotic home. My mother’s death, sexual abuse, violent father, false accusations of my narcissistic aunt, and unsupportive teachers who thought I was being lazy.
I was in so much emotional pain that I kind of overlooked the physical pain. And anyway there was no one to whom I could share any pain. I was alone emotionally, despite having a big extended family.
I cannot really recall when, but one day it suddenly, it dawned on me something was not right with my back. And then slowly the comments, the pointing, and the rejection which was worse pain than the physical pain.
Ignorant, Abusive Father
By the time my father really noticed my back was twisted, my spine had already gone in 3 different directions. At the lumbar, it turned left; at the thorax, it turned right, and again the cervical spine went left.
I was grossly misshapen and my father tried to violently push me into shape. When that did not work, he started his abusive rants. His behavior really fucked my self-esteem. Instead of treating it as a medical issue, I was treated to this traumatic shock treatment.
I began feeling like a freak. And my father added to my grief by calling me the ‘Hunchback of Notre Dame.’
I wanted to die because of the shame.
He was too ignorant and stupid. It never occurred to him to take me to the doctor. Finally, after two years of trying HIS IDIOTIC BEST of getting me straightened out, someone advised him to take me to the doctor.
Insensitive Medical Professionals
You would expect doctors to be sensitive when giving their diagnosis. But I guess for them it just an everyday occurrence. But for me, the patient, it is a life sentence, without hope of redemption.
Very often, the medical professionals instead of easing a patients pain and terror only further adds to the hopelessness by their harmful comments.
The first doctor said that this condition happens for no reason (that’s what idiopathic means) and nothing could be done now as I was done growing. I was nearly 17 years old. But still advised us to go to the Orthopedic Hospital.
At the hospital, again it was the same hopeless diagnosis that I was brought in too late as I had finished with my growth. Maybe an operation, but that was not seriously discussed thank goodness.
This was devastating news to a 17-year-old. The thought that I was going to remain a freak for the rest of my life made me want to kill myself.
Eventually, just to show they were doing something, I was fitted with a brace and told to see if there was any improvement, but the doctor himself did not seem optimistic about any positive outcome.
Family Buried Their Head In The Sand
No one wanted to be bothered with my problems, not even if they are family. Why should they, I was not their responsibility. Besides, my father was not really liked by anyone. He was an aggressive, selfish character.
When he told my Godmother (who according to the whole godparent thing is supposed to help out since my mother was dead) just brushed my back issue with ah, my friend too wears a brace for her back. Once when I met her on way to the hospital alone, she just said okay bye, did not bother to enquire how I was or what was happening.
Not once did she bother to ask about my back or what treatment was going on. She was just too busy cooking for the priests of her parish. I now realize that she was desperate for recognition and praise from the world. Children and godchildren be damned.
Nobody Cares
Another aunt who was also in the church in a big way, reacted like she did not know what my father was talking about and when my father asked me to turn my back and show it to her I balked and broke down. crying ‘what will she do’ after which I ran into my bedroom. I thought she would come after me and console me but no she just left without saying goodbye. Later, she never brought up the topic or try to at least reassure me.
I had a big problem which was clearly visible and yet all pretended not to see, lest they would have to do something. No one wanted the bother.
When my narcissist aunt noticed when she noticed that my back was hunched, in a taunting voice me told me “ Go to a doctor, my friend who has this problem is unmarried.” Those words cut right into my soul like a 15-year-old goes to a doctor alone. Secretly, maybe she was pleased that I was no longer competition
No Longer A Good Enough Friend
Best friends are supposed to understand you, share your joys and pain. However, scoliosis causes a subtle rift in your bestie relationship. Depending on the severity of your condition, there comes a time when you can no longer hide your deformity, despite the oversized, shapeless clothes. You are unable to blend in with the crowd, scoliosis makes you stand out. And, very few want to hang out with a freak-looking character. Definitely, not on a one to one basis, like best friends do.
My best friend slowly found ways to avoid me, pretending to forget about our movie or shopping dates. It was heartbreaking to know the real reason was how I looked. She was ashamed to be seen with me. Finally, for the sake of my own sanity I told her that I could not deal with her inconsiderate behavior, she denied being so. That was the end of ever having a best friend. It was better to be alone.
Married Lover, Who Used Me
I was at my lowest, lonely as hell, a cousin close to me had just died and had broken up with my best friend when I met my lover. He turned out to be a wolf in sheep’s clothing. My dysfunctional home life, my loneliness and more than anything low self-esteem made me a sitting duck for further exploitation. I became trauma bonded with him, despite knowing that I was being covertly abused I did not have the energy or support to walk away.
And nothing is more devastating to know that because of your condition you are treated without any regard. Not many want a deformed sexual partner. This relationship added yet another traumatic reenactment to my already wounded neural pathways.
This is How to Resist Labels & Change Your Outlook
Overcoming Stigma
Scoliosis hurts not just physically, the emotional wounding one has to deal with hurts even more. There is no denying the fact that looks matter and that our distorted body-image is a real thing, not a body dysmorphic disorder (BDD).
Every waking moment your mind is fixated on how your back looks. Your hump protrudes at the back, your breasts are two sizes, your legs are different lengths. And the damn pain, it is a constant.
Recently, Princess Eugenie highlighted scoliosis by showing off her scar on her wedding day. But would she have shown her back had it not been straightened through surgery, I doubt she would have put it on display.
However, even today scoliosis is not considered a relevant disability like other physical disabilities because most of us can continue with daily living despite the pain. So instead of compassion all you get is being labeled or branded as the Hunchback.
Releasing Painful Emotions and Healing
It has been a long, painful, faith-filled journey trying to heal my scoliosis. I am glad now that no one gave a damn about my back or else may have been pushed into surgery. Today, I am really glad I did not opt for surgery.
Healing scoliosis has meant releasing and healing all the accumulated ACEs which caused my scoliosis alongside the secondary woundings that were due to me having SCOLIOSIS. Overcoming the stigma associated with scoliosis has been more of a challenge than the original hurts that caused my scoliosis.
The most painful wound was being dismissed and scorned by people close to me for how I looked. It was very hurtful to deal with the contempt of my peers, brother, cousins. When the cousin whom I cared for while I was was dealing with so much shit as a 12-year-old denied knowing me, it felt like a knife going through my heart.
Your Environment Matters
Scoliosis can get better or worse depending on the environment you are living in. If it continues to be toxic you are going to get worse, surgery or not.
It has taken me a long time to heal, mainly due to my environment not being supportive enough. Only since the last 3 years was I able to take a break from work and live in relative peace, and calm.
Moreso, the last 2 months of beach therapy and living in a virtually stress-free environment has brought about dramatic changes in my mental state. As the blocked negative emotions release, miraculously my twisted spine becomes aligned. Every day, I can see my back getting straighter and straighter.
No longer do I worry about how I look from behind. or front or how to camouflage my defects. What a relief not to think about my body, I can now focus on living.
Further Reading
22 Truths People With Scoliosis Wish Others Understood
