I was diagnosed with scoliosis when I was 13. I wanted to hide away in my little turtle shell of a back brace and be invisible. It can be so scary, especially at that age, to be open about anything that makes you different. I felt as stiff emotionally as I did physically. In the beginning, I was a shell of a person. I hid my brace. It was a street fight to get me to wear it (my poor mother!). Some people called me “scoli” or they would knock on my back brace and run away.
Here’s what I’d tell myself, five years on:
Dear 13-Year-Old Self,
Are other kids’ spines shaped like their initials (S for Stephanie)? No. Own it!
So what if kids make fun of you while you put your back brace on in the locker room after gym class? Locker rooms are weird for every middle schooler.
Don’t avoid hugging people or worry about them being weirded out by your back brace. Embrace the brace. Tell people to punch you in the stomach and that you have abs of steel. Don’t worry, guys are super into the damsel-in-distress thing.
The friends you laugh and cry with about body insecurity are the friends you’ll laugh with and cry with forever. Keep them. Don’t fret about being short. You’ll grow 2 inches after puberty when you get back surgery in your 20s.
Don’t do drugs to fit in. You’ll have more than enough stories to tell about hallucinating on your pain meds post-surgery. People spend a lot of money on Spanx and corsets to suck it in. So, I mean, most of yours was covered by insurance. Think of your back brace as a history lesson of 16th century women and fashion.
Stephanie’s back after surgery
All joking aside, yes, bullies are awful. You’ll have pain. You’ll ask why. You’ll feel like an alien from outer space and that no one understands you. Don’t let it get under your skin. Most importantly, turn your wounds into wisdom.
Sincerely,
You
A version of this post originally appeared on BoredPanda.
Stephanie is a Seattle-based photographer who seeks to impart a message of love and acceptance. Physical deformity, disability, or illness is nothing to be ashamed of.
Hi, my name is bethanyswrites. I’m new to The Mighty and look forward to sharing my story. I live with Fibromyalgia, Chronic Pain and Tiredness and mental health issues.
Hi, my name is Ready4change22. I'm here because although they fixed my scoliosis with Herrington Rods when I was 12, at the age of 52, I now have a 30% curve in my lower back which is causing me considerable pain. They cannot fix the new curve without wrecking my quality of life completely. So, I am looking forward to increasing pain in lower back, butt and down my legs until I can't stand it anymore and go in for the surgery. Plus as an added bonus, the Herrington Rods in my upper back are fighting old age and gravity, causing lots of pain in upper back and shoulders.
Lungs are crushed under the weight of water Born by All you were created to be And all that you’ve become instead Genetics-done or mother’s neglect And what you’ve chosen For us Despite all the love you claim I can’t accept That I should drown So you can breathe Because if that is love What’s left for me And lest I gasp for air and pull your arm Desperately signaling This darkness floods My face Is wet with so much regret Decisions made from disillusionment And deformed bones are just the base for the core malignancies I’ve adorned since
Face goes crimson Emergency Deprived of what I need But you take another drag And further shrink my human needs With what you think my needs should be Which is you Then ask me not to look so blue Bc it makes it harder for you to breathe MY AIR I guess that’s what i get for jumping ship Into the sharks I must be blind How do I keep mistaking trauma bonds for life And stable foundations I once loved the sea And now I fear it Much like you Much like you
We had a severe storm go through here Monday,, thankfully we didnt have any bad damage,, just three fence panels went down,, and huge branches and tree limbs all over the yard, front and back.. sooooo I went around for two days picking up all the branches and twigs, tried to protect my low back , pace myself,,, then today mowed the front yard,,, you know the literal straw that broke the camels back?? Well that was the last straw... I can hardly move now, my neck and shoulders are killing me , causing a big headache,, my back is weak, and low back is sooooooo weak.. I did take precautionary measures,, and post overdoing it measures,, I am not new to this game,, Ive been in chronic pain since 1980, and even before that,, have multiple arthritic conditions and autoimmune pain conditions, fibro,,, degenerative disc disease, scoliosis, severe osteoporosis, ect..... Im in my 60s,, . I have a question for those of you who have lived lives of chronic pain. Do any of y'all ever get so sick and tired of being cautious, of holding back from doing things, things you enjoy,, for me its working outside, being in the sun,, doing physical things.. So sometimes do any of y'all just say screw it and do more than you know you should,, knowing full well you will pay later?????????? Or is it just me????? I know I will get through this,, I will be miserable for anywhere from a few days, to a week or more... but sometimes I get so tired of holding back.
I recently went to my orthopedic doctor for my scoliosis and he said at the appointment that I had back in march of 2021 that my curve should only get worse by 3-4 degrees in the next 6 months and said that I should be fine but that was 6 months before this appointment and he told me that it got worse by 7-8 degrees and that we needed to scheduled another appointment for the next 6 months (September) and that I will either be put in a brace or surgery will be needed. I AM TERRIFIED! I hate to think about the fact that I might not be able to do gymnastics after I have back surgery (If I Do) and I only have three years of gymnastics left that I am eligible to do. and it makes me so scared for the future. I want to keep my nerves down because the appointment is nit until September and I have time to not be worried before the appointment.
Hi, my name is BabyCatcher. I’m new to The Mighty and look forward to sharing my story. I'm currently applying for disability. I'm struggling to accept that my career is a thing of the past. Looking to discuss how best to cope with all these feelings and interested in how others may have had to adjust their daily activities or how it has impacted their relationships with family.
Cerebral palsy is one of those universally known and yet universally misunderstood things. If I tell people that I have CP or I explain the significance when asked about my green ribbon lanyard at work, I get the usual response. You probably know the one: “oh…” and they sagely nod. They know. But how can they know when I don’t? Cerebral palsy has been part of my life as far back as I can remember. I was told when I had to wear eye patches or go to PT that I had CP as a little girl. It was the explanation for all of it. As a kid, cerebral palsy meant that I had constantly skinned knees and wore a brace off and on, on my left leg. It also meant that I dealt with a fair amount of teasing and knew something about emotional and physical pain. But it didn’t stop me. I saw myself as a normal kid. My balance was something to be laughed off and if my back hurt, I didn’t say anything. At a seventh-grade health fair, one of the volunteers at a booth told me I needed to see a doctor because I had scoliosis. Thank you early aughts, I was a combo of edgy, quirky, and the pick me girl. So much cringe! I looked at the kindly lady and said, “The doctor won’t do anything — I have CP.” She said “Oh…” That was the beginning of my medical cynicism. I’m far from that 12-year-old girl. A lot has changed in the 20 years that have lapsed, but so much is the same. I’ve had another surgery since then, I’ve tried more PT, I’ve had Botox, and I even tried dry needling with electroshock. I’ve found that I am the proverbial zebra. Botox makes me feel high. I had an adverse reaction to the dry needling. I know that there is no cure for CP. That fact has been borne home to me throughout my life, but with each appointment hope flares that I may just find the thing that mitigates the chronic pain. I want to find that normal I had as a 12-year-old girl, but I think that has passed me by. So I try to be my own advocate. I try to level with doctors that I’m not looking for a magic cure and that in general, I know where I’m at. What I want to know is where my people are? Is there anyone who is existing beyond the advice to “parents of children with CP”? Is there advice to the adults, who wonder if their mobility will steadily decline or if that pain in my neck is because I slept wrong or if it’s a weird spastic thing? I mean these are the questions I’m Googling. Are there people who found out that tongue spasms are truly a thing and it doesn’t mean I’m having a stroke, it just meant that I needed to quit chewing gum? At what point should I decide to quit working a regular 9-5? There aren’t copious amounts of advice for these questions. And that is how I found The Mighty, but I wish that there were more resources for adults with CP. The brain doesn’t like an unknown and I’m wary of yet another appointment, another opinion, and another flare of hope.
So only a few years been diagnosed with autism being female you know it is what happens
I find it so hard in the community Who else does Where do I fit I function like a so called norm But don't understand conversation enough or social.... Why is it that if you are not fully unfunctional that people lump everyone together oh it's disability not being able to see each person and putting people who have high behaviours above others....
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