What does having scoliosis entail?
Having scoliosis growing up caused me to become bullied. i started wearing a back brace at the age of 11 and i was punched, took pictures of, fainting, blistering, kids stealing my brace and calling it a condom, etc. From there the doctors gaslit me.
Do you have other related conditions?
yes. i have narrowing of the spinal canal, spinal stenosis, a mild disc bulge, pelvic misalignment, and pinched nerves.
the doctors refused to give me an mri until i was 15 because i had complained of pain for years. they said scoliosis doesn’t cause pain, which may be correct, but scoliosis can cause other bodily deterioration that leads to pain.
What type of scoliosis do you have?
i have a bit of a combined scoliosis, leaning more on the thoraco lumbar side.
How many degrees?
the largest degree i have is about 37° which is mid back, my lower lumbar degree is about 15°
What are your symptoms?
growing up i did not know i had scoliosis until my 4th grade physical exam, however previous x-rays show signs i’ve had it since 1st. there were not a whole lot of symptoms until i got older and my scoliosis progressed. i had continued to talk to my doctors about pain which was wrote off, after years of begging he granted an mri to shut me up. he has not talked to me since i have got the results because he was wrong.
Does your scoliosis cause you pain or impose any restrictions?
yes and no. doctors can disagree with me if they like however, ask them if they have scoliosis and experience it or if they just like to talk about people they know who have it.
when i lean my shoulders to the left or right while my hips stay still i can feel my spine crunching and bones grinding. it does not hurt much, just pressure and pinches. sometimes i feel like a creaky door. cracking my back by twisting is a huge pain relief and/or pain causer, i’ll be able to relieve pressure off my back by twisting but i can only twist so far before i feel my ribs grinding my pelvic bone or skin. weirdly enough if i can lift my rib up and over my pelvic bone when i twist, it doesn’t restrict me. RIP my discs.
other than that just nerve pain shooting down my legs, uncontrollable leg tremors/shaking, collapsing knees, being short as fuck, and cant run/walk for long periods of time.
When were you diagnosed with scoliosis?
i stated earlier i was diagnose with scoliosis when i was around 9, but an x-ray i had done previously shows i had scoliosis around the age of 6
How does scoliosis affect your day-to-day life?
pain, some breathing problems, struggling getting comfy, fuck wooden chairs, fuck most chairs. it’s honestly some what hard to think, there’s definitely lots of affects however they happen daily it’s hard to keep track
Have you had any treatment to help? How effective are they?
yes. i have done bracing, chiropractic work, acupuncture, PT, massages, yoga, alternative medicines, etc.
bracing was decently effective but it’s very short term and not realistic imo. you have to be about puberty age, starting your period to start bracing. once you start your period you have 2-3 years of bracing. being a young child dealing with their period, school, summer heat, it is hard for a young kid. i’d come home from school crying wanting to take off my brace cuz i’d be drenched in sweat, had blisters, couldn’t breath, and my mother would scream at me to keep it on and she would take everything away to punish me when i didn’t want to wear it.
chiropractic work and PT were the most effective but after a few days the pain is worse because you become used to feeling loose.
there’s so much more that comes with scoliosis than physical pain, the emotional pain that comes with it is never talked out. i have a lot of internalized trauma from my experience with it.
(If you have had surgery) What was it like?
i have not had surgery, as much as i’m in pain and am on the border of needing surgery, i won’t do it unless i’m older. the cons outweigh the pros to me
Have you experienced any sort of stigma for having scoliosis? Did that take a toll on you? How did/do you deal with it?
yes, i was bullied extensively for it. i looked funny cuz of the brace, even when under clothes. i’d have to change in the locker room and when asked to change in the bathroom instead, PE coach made me change infront of the other girls while she watched. once the girls saw the brace it was all rumors from there. kids started punching me because my brace was hard plastic and it wouldn’t hurt to see if rumors were true. not many people did it hard but the few that did fucked their hands over more than me physically. mentally it hurt me more. if i took my brace off because i couldn’t breath or i was about to pass out somehow someone saw it and took it from me and carried it around school. i only took it off 3 times during that year.
i ended up stopping wearing my brace, despite the punishments at home. i still cry over some of the things that have happened
What is your general outlook on your condition?
i’m not sure how to answer this. this is hard. i didn’t expect this questionaire to bring up so much memories and be this difficult lol
Have you lost opportunities due to having scoliosis?
yes.
Does scoliosis have an affect on what you wear or things you do? Is there anything that having scoliosis has prevented you from doing that you really wish you could do?
not anymore. i wear what i want and what i like and look good doing it. i wish i could be taller and i wish i could be more physical.
How did/does scoliosis affect aspects of your life (education, career, relationships e.t.c)?
bullied so much i was homeschooled and eventually dropped out. would attend new schools but i just didn’t know how to fit in.
What did your parents do right and wrong, in raising a child with scoliosis?
the punishments. they should never have punished me and i’ll never forgive them. i hate them for it. i just wanted to come home to be comforted by my mom but instead she yells at me about needing to put my brace back on and my break was over. i had to sleep, eat, and do everything in it. i had to wear it 22 hours a day
What are misconceptions about scoliosis?
there’s no pain, there’s no affects
What do you find is the biggest challenge of living with scoliosis?
i have bigger problems than scoliosis now lol
What are your fears that stem from having scoliosis?
i won’t be able to walk when i’m in my thirties or that i’ll need surgery and will be a stickman by that time and then i just continue deteriorating
What are things to NOT say or do to people who have scoliosis?
only my friends can call me quasimodo
How do you feel about how scoliosis is portrayed in media? What are some of your favorite pieces of media with authentic representation?
there’s a book called braced and i read it during the time i wore my brace and at that time it was a huge comfort because i didn’t know anyone else that knew what i was going through.
Who are your favorite celebrities or characters with scoliosis?
not sure
What would you like to say to people who have scoliosis?
you arnt alone, it’s not your fault. even if your disability makes you feel stuck, there’s such things as crunches (pun intended)
What would you like to say to parents of people who have scoliosis?
be supportive and understanding. talk to your kid about how you can help and what they need. try to find ways to accommodate. give them reward systems and so fucking what it causes extra money, it gets ur kid to wear the brace. that’s your job. they are a child and you can’t expect them to know any better. you would struggle doing it as an adult, be proud your young child is trying.
What do you think society could be doing to better serve people with scoliosis?
not bully, find comfier braces, AC units in schools, private bathroom/changing room
What would you like people to know about scoliosis?
if you bully someone for their scoliosis or disability. fuck you