I was never traumatized by it until
Certain people in my family started insulting me (long story) I’m trying to learn to like how my back looks and to better myself and not let my scoliosis affect me pain wise.
That has got to be most awful thing when its your own family who is being the bully and not being supportive. Family is supposed to be your lifelong teammates.
My ex passed mean comments on my condition in front of my face just cause she was mad .. I broke up with her after that .. just try avoiding people who pull you down
Edit: she said you should be thankful that I’m with you after that arc in your body no other girl would even love you . I just wanted get these lines off my chest and tell someone about what she said to me 😭😭😭😭 thanks Reddit I love you all
That is horrible. I can’t even believe a person would be so self-absorbed as to say such a thing. But I know that it’s true that people say such awful things, having heard such from my own clinically narcissistic sister.
I don’t know whether you were able to have your wits about you enough after such a shock to remind her that it hadn’t stopped HER from being with you! (I never think of what to say until much, much later!)
You have done a wise and fortunate thing breaking up with her. I have known lovely people in my 63 years who partner with others who have physical difficulties with their health, some visible and some not. I just celebrated 42 years with a wonderful person who chose me for who I am inside. I hope you find such a person yourself!!
I wouldn’t call it trauma, but it is harder than almost anything else I have experienced in my life. I’m 63.
Sometimes I have so much pain. I wrote a poem about it that I will post here sometime. It starts out “pain is a serpent from Hell”
But a few months ago I started with a new PT. He has provided treatment for me that is totally different from any that I had before. Over the years I have had 9 different PTs! He has helped me get stronger than I have ever been in my life, all over my body, legs, hips, arms, core. I never knew I could be physically strong at all, especially this strong. So there is Hell, but there is also triumph!
It was absolutely traumatic at age 12 to have this major surgery. I felt like a freak and it was hard navigating middle school feeling that way.
Things can always be worse though and I feel like this happened to me so worse things didn’t.
I wouldn't say traumatized, but I did have a lot of mental health issues for a bit (but not anymore). It's not over the diagnosis part, though. I was just glad to put a label to what was going on. But rather, it was people's reactions to it. A lot of people are really insensitive, to say the least, and need to grow up as well as learn more about it.
Yup! Long comment ahead about trauma
I have complex medical trauma and am working through TF-CBT in therapy now. I have other traumas I won't go into but re: scoliosis/health, here are some things I've noticed with the benefit of hindsight:
* The "bad feeling" I get whenever I go to a hospital for any reason is called being triggered! Imagine that!
* Also, flashbacks are not like what they show in movies, where you are like transported back to a certain place and relive all the events in chronological order. They can be emotional or sensory-based, not necessarily images.
* To this day when I am particularly stressed about something in life, I have recurring dreams about forgetting to put my brace on and being terrified that I ruined all my efforts and will need to get the surgery. I'll wake up in a cold sweat looking for my brace and then remember my spine has literally been fused for six years.
* I hate feeling like I'm not in control of my body; as a little kid I was kind of a hypochondriac. I thought every little ache was a latent life-threatening illness or something and I lived in fear of becoming sick. That has gone away as I've gotten older and learned more about basic biology, but to this day, even being sick with a cold makes me irrationally upset. I'm also terrified of getting pregnant \[for lots of reasons, but mostly\] because of all the physical changes you can't control.
* I'm very reactive and defensive of my emotions, I think in part because they weren't really validated in the ways I needed when I was a little kid--everybody expected me to be resilient because I was so young (diagnosed at 7) & generally a well-behaved/cheerful kid. Nobody ever really sat with me and said that it made sense for me to feel scared, upset, angry, anything like that. I was sort of just told that everything would be fine, even when I saw that things were not fine. I would write "I hate my brace" on my brace and all the specialists would notice it and laugh which made me feel quite embarrassed.
* Aside from health stuff, I have a bit of a complex around sex and my body that I'm also working through in therapy. I think part of this is due to the way I had to let so many people touch and examine me and, while I didn't have the words for it at the time, I now realize that whole process was quite dehumanizing, like all those people just cared about my spine, not me.
* Through part of my scoliosis journey I was also in a very traumatic first relationship. For example while I was literally bedridden recovering from surgery in unimaginable pain, I found out my then-bf was cheating on me lmfao
* Constantly feeling like a burden on my loved ones because of medical expenses, the time they took off work to drive me to appointments, etc.
* I crave information because it comforts me, and I think this comes from nobody really explaining to me what was going on and all of the impact that it would really have. I hate being taking by surprise or feeling unprepared (I also have generalized anxiety disorder)
* There has been this pattern in my life of me always doing what I'm told, and doing everything as right as possible, but it still doesn't work out the way it's supposed to (e.g. the way I wore my brace as instructed, and it didn't work). This resulted in me feeling like life is really unfair & being very jealous of other people who don't care about being such a rule-follower
Just some things off of the top of my head. I know everybody's experience is different. Hope this helps!
Thanks❤️ I think because I was so young I didn’t realize how vulnerable and uncomfortable I really felt, since nothing “bad” (like, inappropriate) ever happened to me at any of my appointments. But at the same time, it was all these people having access to my body in ways that I didn’t want and I didn’t have any choice in the matter. I think that kind of thing has more of an impact on kids than people realize. Now that I’ve been unpacking this in therapy, I wish there were a therapist or at least some sort of advocate for kids in medical situations who can help them understand what’s happening, why, and how they can work through their feelings about it.
Absolutely.
I have a duel diagnosis of PTSD and C-PTSD (complex, caused by long-term trauma rather than one event like PTSD)
PTSD from my surgery. I did not get proper treatment for my scoliosis. I was released too early, with nothing but some pain meds and long bandages. I have been sexually harassed (while underaged at the time, now an adult) by my then 55 year old surgeon. My struggle with surgery is very different than most as my struggles are directly abuse and not caused by scoliosis itself.
C-PTSD from the hell that followed my surgery. My surgery was a failure and left me physically deformed (one shoulder an inch and a half higher than the other, extremely wide and rotated ribcage, broad shoulders and a winged scapula that protrudes from my back like Quasimodo.) i became severely anorexic for a time due to my widened ribs making me feel masculine and wide. I am mostly recovered now but the effects of the bullying and extreme body dysmorphia literally took my life from me.
I have scoliosis and it has pretty much changed my life for the worst.. as I got older. I should have listened to my chiropractor when I was 22tekling me to keep up with my treatments.. or else..or else I'll be where I'm at right now..
Needing a metal rod in back.
I'm in so much pain all the time can't do nothing ,can't stand to wear a bra ,nothing the least bit hugging me around my waist or boobs,or back.. it caused building disc and other problems. Now I'm majorly fking depressed my panic and anixety level are out of this world as my spine is laying towards my lungs . It sucks I'm scrard to death to have surgery..
Do they take out ur spine that crooked and do what??
Bras are inventions of the devil, I believe, but one I’ve found that I can cope with is the Springrose Adaptive Bra (Springrose .co). It can be adjusted so that the right and left have different degrees of size and tightness which is ingenious. The best part for me is that it has non-stretch cotton cups, so that the cups are holding my boobs, not pressure from the straps or band.
Meanwhile have you had radio frequency ablation? It kills some of the pain nerves. It has been life changing for me. I still have pain meds but after the ablations they actually work instead of just taking the edge off.
Please don’t beat yourself up about the past. Most orthopedists agree that PT can strengthen your core but not really change much about the progression of the curve, unless it is very specialized like Schroth PT. Certainly not what is available from chiropractors.
I don’t know anything about ASC surgery. You might want to repost this as a reply to everyone or a new post. A lot of people here have had it. I was referring to something else entirely. The ablations are done with small needles. Each takes 90 seconds. You can have anesthesia if you want it, but I found could cope with it. Nothing is left in your body afterwards. I had two. Then I went back a year later and had two in other places. Truly they are life changing.
I'm not sure I would call it trama...self conscious definately. I am very aware of it, and as such, I try to dress so it's not so noticeable... you can only camouflage it so much. But, the way I see it... if it bothers someone that I am deformed... don't look at me. Problem solved.
Yes. Body dysmorphia from diagnosis, phobias of hospitals since surgery.
I was never traumatized by it until Certain people in my family started insulting me (long story) I’m trying to learn to like how my back looks and to better myself and not let my scoliosis affect me pain wise.
That has got to be most awful thing when its your own family who is being the bully and not being supportive. Family is supposed to be your lifelong teammates.
My ex passed mean comments on my condition in front of my face just cause she was mad .. I broke up with her after that .. just try avoiding people who pull you down Edit: she said you should be thankful that I’m with you after that arc in your body no other girl would even love you . I just wanted get these lines off my chest and tell someone about what she said to me 😭😭😭😭 thanks Reddit I love you all
That is horrible. I can’t even believe a person would be so self-absorbed as to say such a thing. But I know that it’s true that people say such awful things, having heard such from my own clinically narcissistic sister. I don’t know whether you were able to have your wits about you enough after such a shock to remind her that it hadn’t stopped HER from being with you! (I never think of what to say until much, much later!) You have done a wise and fortunate thing breaking up with her. I have known lovely people in my 63 years who partner with others who have physical difficulties with their health, some visible and some not. I just celebrated 42 years with a wonderful person who chose me for who I am inside. I hope you find such a person yourself!!
Yes man I’m looking forward in life .. trying to find someone who loves me the way I am and never make me feel inferior just for sake of their ego !
I wouldn’t call it trauma, but it is harder than almost anything else I have experienced in my life. I’m 63. Sometimes I have so much pain. I wrote a poem about it that I will post here sometime. It starts out “pain is a serpent from Hell” But a few months ago I started with a new PT. He has provided treatment for me that is totally different from any that I had before. Over the years I have had 9 different PTs! He has helped me get stronger than I have ever been in my life, all over my body, legs, hips, arms, core. I never knew I could be physically strong at all, especially this strong. So there is Hell, but there is also triumph!
Love this post. Good for you.
Thats great
It was absolutely traumatic at age 12 to have this major surgery. I felt like a freak and it was hard navigating middle school feeling that way. Things can always be worse though and I feel like this happened to me so worse things didn’t.
Yes. Then god added migraines ✅✅
Oh yes. I wish I weren’t with you there but I am.
I was when I was diagnosed and had to wear a Milwaukee brace . I had surgery at 15. That traumatized me but made me stronger.
Same I also wore the Milwaukee brace and had surgery at 16
I also wore the Milwaukee brace for two years... now I have the cast
I wouldn't say traumatized, but I did have a lot of mental health issues for a bit (but not anymore). It's not over the diagnosis part, though. I was just glad to put a label to what was going on. But rather, it was people's reactions to it. A lot of people are really insensitive, to say the least, and need to grow up as well as learn more about it.
Yup! Long comment ahead about trauma I have complex medical trauma and am working through TF-CBT in therapy now. I have other traumas I won't go into but re: scoliosis/health, here are some things I've noticed with the benefit of hindsight: * The "bad feeling" I get whenever I go to a hospital for any reason is called being triggered! Imagine that! * Also, flashbacks are not like what they show in movies, where you are like transported back to a certain place and relive all the events in chronological order. They can be emotional or sensory-based, not necessarily images. * To this day when I am particularly stressed about something in life, I have recurring dreams about forgetting to put my brace on and being terrified that I ruined all my efforts and will need to get the surgery. I'll wake up in a cold sweat looking for my brace and then remember my spine has literally been fused for six years. * I hate feeling like I'm not in control of my body; as a little kid I was kind of a hypochondriac. I thought every little ache was a latent life-threatening illness or something and I lived in fear of becoming sick. That has gone away as I've gotten older and learned more about basic biology, but to this day, even being sick with a cold makes me irrationally upset. I'm also terrified of getting pregnant \[for lots of reasons, but mostly\] because of all the physical changes you can't control. * I'm very reactive and defensive of my emotions, I think in part because they weren't really validated in the ways I needed when I was a little kid--everybody expected me to be resilient because I was so young (diagnosed at 7) & generally a well-behaved/cheerful kid. Nobody ever really sat with me and said that it made sense for me to feel scared, upset, angry, anything like that. I was sort of just told that everything would be fine, even when I saw that things were not fine. I would write "I hate my brace" on my brace and all the specialists would notice it and laugh which made me feel quite embarrassed. * Aside from health stuff, I have a bit of a complex around sex and my body that I'm also working through in therapy. I think part of this is due to the way I had to let so many people touch and examine me and, while I didn't have the words for it at the time, I now realize that whole process was quite dehumanizing, like all those people just cared about my spine, not me. * Through part of my scoliosis journey I was also in a very traumatic first relationship. For example while I was literally bedridden recovering from surgery in unimaginable pain, I found out my then-bf was cheating on me lmfao * Constantly feeling like a burden on my loved ones because of medical expenses, the time they took off work to drive me to appointments, etc. * I crave information because it comforts me, and I think this comes from nobody really explaining to me what was going on and all of the impact that it would really have. I hate being taking by surprise or feeling unprepared (I also have generalized anxiety disorder) * There has been this pattern in my life of me always doing what I'm told, and doing everything as right as possible, but it still doesn't work out the way it's supposed to (e.g. the way I wore my brace as instructed, and it didn't work). This resulted in me feeling like life is really unfair & being very jealous of other people who don't care about being such a rule-follower Just some things off of the top of my head. I know everybody's experience is different. Hope this helps!
Very well said, especially about craving information and how invasive medical exams are.
Thanks❤️ I think because I was so young I didn’t realize how vulnerable and uncomfortable I really felt, since nothing “bad” (like, inappropriate) ever happened to me at any of my appointments. But at the same time, it was all these people having access to my body in ways that I didn’t want and I didn’t have any choice in the matter. I think that kind of thing has more of an impact on kids than people realize. Now that I’ve been unpacking this in therapy, I wish there were a therapist or at least some sort of advocate for kids in medical situations who can help them understand what’s happening, why, and how they can work through their feelings about it.
Absolutely. I have a duel diagnosis of PTSD and C-PTSD (complex, caused by long-term trauma rather than one event like PTSD) PTSD from my surgery. I did not get proper treatment for my scoliosis. I was released too early, with nothing but some pain meds and long bandages. I have been sexually harassed (while underaged at the time, now an adult) by my then 55 year old surgeon. My struggle with surgery is very different than most as my struggles are directly abuse and not caused by scoliosis itself. C-PTSD from the hell that followed my surgery. My surgery was a failure and left me physically deformed (one shoulder an inch and a half higher than the other, extremely wide and rotated ribcage, broad shoulders and a winged scapula that protrudes from my back like Quasimodo.) i became severely anorexic for a time due to my widened ribs making me feel masculine and wide. I am mostly recovered now but the effects of the bullying and extreme body dysmorphia literally took my life from me.
I have scoliosis and it has pretty much changed my life for the worst.. as I got older. I should have listened to my chiropractor when I was 22tekling me to keep up with my treatments.. or else..or else I'll be where I'm at right now.. Needing a metal rod in back. I'm in so much pain all the time can't do nothing ,can't stand to wear a bra ,nothing the least bit hugging me around my waist or boobs,or back.. it caused building disc and other problems. Now I'm majorly fking depressed my panic and anixety level are out of this world as my spine is laying towards my lungs . It sucks I'm scrard to death to have surgery.. Do they take out ur spine that crooked and do what??
Bras are inventions of the devil, I believe, but one I’ve found that I can cope with is the Springrose Adaptive Bra (Springrose .co). It can be adjusted so that the right and left have different degrees of size and tightness which is ingenious. The best part for me is that it has non-stretch cotton cups, so that the cups are holding my boobs, not pressure from the straps or band. Meanwhile have you had radio frequency ablation? It kills some of the pain nerves. It has been life changing for me. I still have pain meds but after the ablations they actually work instead of just taking the edge off. Please don’t beat yourself up about the past. Most orthopedists agree that PT can strengthen your core but not really change much about the progression of the curve, unless it is very specialized like Schroth PT. Certainly not what is available from chiropractors.
So what is the ASC treatment exactly different from the metal rod it's still surgery
I don’t know anything about ASC surgery. You might want to repost this as a reply to everyone or a new post. A lot of people here have had it. I was referring to something else entirely. The ablations are done with small needles. Each takes 90 seconds. You can have anesthesia if you want it, but I found could cope with it. Nothing is left in your body afterwards. I had two. Then I went back a year later and had two in other places. Truly they are life changing.
I'm not sure I would call it trama...self conscious definately. I am very aware of it, and as such, I try to dress so it's not so noticeable... you can only camouflage it so much. But, the way I see it... if it bothers someone that I am deformed... don't look at me. Problem solved.
The surgery traumatized me for sure. Not a day goes by that I don’t think about it, and it’s been 23 years since I had it.
Absolutely
Unfortunately yes, I'm in a cast due to scoliosis...
Yes, mostly from the agony it causes and the Assholes who see it as a carte Blanche to abuse.
Yes, the way my parents obsessed about my body image and called me "crippled" led to an eating disorder that took years to recover from