New member

[so_shy]

Hi. I'm new. And a little nervous. I first found this board a few years ago but was hesitant to join. I always wanted to discuss my scoliosis and kyphosis with someone else but felt afraid, embarrassed. Still do.

Well just wanted to introduce myself. I hope over time it will get easier to discuss. I have lots of questions.

Thank you.

[titaniumed]

So shy,

We are all in the same boat here and you found the right place! Ask anything you want.

We are glad you posted!
Welcome
Ed

[LindaRacine]

Hi shy...

You've posted in the "Parents and Family Members" forum. There are forums for both children who are patients and adults who are patients. I'd like to move your thread to the appropriate forum. How old are you?

--Linda

[JenniferG]

Hello so shy, and welcome! You'll find we're all happy to talk about scoliosis here, it's a big part of our lives too. There are lots of knowledgeable and experienced people who can often answer your questions and offer advice. I hope you'll feel comfortable here.

[so_shy]

Hi shy...

You've posted in the "Parents and Family Members" forum. There are forums for both children who are patients and adults who are patients. I'd like to move your thread to the appropriate forum. How old are you?

--Linda

Being new, I wasn't sure which forum I was supposed to introduce myself. I'm in my early 40s.

[so_shy]

Hello so shy, and welcome! You'll find we're all happy to talk about scoliosis here, it's a big part of our lives too. There are lots of knowledgeable and experienced people who can often answer your questions and offer advice. I hope you'll feel comfortable here.

Thank you, Jennifer.

I have -- and have had -- lots of questions. (medical, psychological, etc.)

With time I hope I'll feel comfortable enough to ask them.

And that I suppose raises the first question ... do others find it difficult to talk about their condition? I've always been embarrassed about even bringing it up. I hope what I'm saying makes sense. It's an emotional thing for starters. Low self-esteem.

[JenniferG]

I think we're all different. I ignored my scoliosis until it was hurting enough that I couldn't ignore it any longer. It never bothered me until then. My curve was 68 degrees at time of surgery but until my 50s, I don't think it was noticeable, (perhaps I was deluding myself) but it progressed rapidly after 50, as seems to happen a lot from my reading, here and elsewhere.

But others have felt differently about their scoliosis.

I don't think I realised how bad it was until I was straightened up. The difference was amazing.

[jrnyc]

hi so_ shy...
and welcome...

no need for embarrassment here...the forum is just for those with scoliosis, & the problems it brings....so this is the one place you can feel comfortable... discussing, asking questions, sharing...
you may find answers to your questions, as well as support & understanding from some really nice people...


jess

[leahdragonfly]

Hello so-shy,

welcome to the forum, and I am glad that you have found the courage to post here. We are all living with scoliosis, so you do not need to feel embarassed or hesitate to ask any question. I know I have always hated how my crooked back looked, and I never much liked talking about my scoliosis with others. But here, we are all friendly and we understand how it is to live with scoliosis. And everything is entirely anonymous.

Please feel free to ask any question you want. We are all here to support each other. I look forward to hearing more from you.

Take care,

[so_shy]

Hello so-shy,

welcome to the forum, and I am glad that you have found the courage to post here. We are all living with scoliosis, so you do not need to feel embarassed or hesitate to ask any question. I know I have always hated how my crooked back looked, and I never much liked talking about my scoliosis with others. But here, we are all friendly and we understand how it is to live with scoliosis. And everything is entirely anonymous.

Please feel free to ask any question you want. We are all here to support each other. I look forward to hearing more from you.

Take care,

First, should I post all my questions in this thread? Or when I want to address new subject matter should I start a new one. I have a few questions, and they deal with different aspects of my condition (some are medical, some psychological, and so on).

Second, thank you for the warm welcome. I know "everything is entirely anonymous" (or is supposed to be) but I've just become so fearful. I have always been and still am so uncomfortable, even afraid to talk about how I feel about having these conditions (kyphosis and scoliosis). I have had terrible experiences with being made fun of how I walk, sit, or just look. Then the few times I've tried to say how much I hate having these conditions, I've been scolded for complaining about expressing my feelings. So I feel trapped. On one hand I have the "there he goes walking/sitting funny again" and comments much worse. And on the other hand, I can't tell anyone how lousy I feel about myself because I'll get the old stop feeling sorry for yourself, or it's no big deal, live with it, or others have it worse, or other's have bigger problems, real problems, etc. And of course then I feel guilty, so i have to just keep it to myself. Hate myself and keep it to myself.

The last time I told anyone how lousy I feel about myself because of these conditions (scoliosis & kyphosis) was 11 years ago. I gave up talking to anyone about it in the real world. So now I've come to the "virtual" world where I'm hoping I can express this emotional agony. Even with the notion of anonymity, it's still scary (as I said I found this site a couple of years ago, and kept putting off joining, that's how fearful I am. Still fearful someone in the real world will see this, find out it's me, and scold me for my genuine feelings, for my self-loathing, telling me things like "stop feeling sorry for yourself" or "other people have bigger problems, or real problems.")

I think I'm repeating myself so I'll stop at this point. I have to admit, I'm very nervous typing this. Guilt. I shouldn't be complaining. Yet, I just hate holding it in because the hurt is so real.


(if this helps any, just to let you know, when I was in my early twenties and had stopped growing, I was told my scoliosis was neither mild nor severe, but in between. I guess bad enough to look "abnormal" but not bad enough to warrant surgery. And as I said, I also have kyphosis.)

[loves to skate]

Hi So-shy,
I'm so glad you finally jumped in to this Forum. Not a single one of us will laugh at you or say that you shouldn't feel one way or another. This is the best place in the world to express your feelings and ask any and all questions. There are so many helpful and wise people on this Forum, so welcome aboard and let it all out. You will feel so much better once you realize you are not alone.
Sally

[Pooka1]

I don't know who said those things to make you feel that way but if it is your parents, I hope that one day you can stop blaming yourself for their blatant incompetence. This isn't your fault.

Cut yourself some slack. You are among friends who care.

[so_shy]

Hi So-shy,
I'm so glad you finally jumped in to this Forum. Not a single one of us will laugh at you or say that you shouldn't feel one way or another. This is the best place in the world to express your feelings and ask any and all questions. There are so many helpful and wise people on this Forum, so welcome aboard and let it all out. You will feel so much better once you realize you are not alone.
Sally

Almost everything I've seen written about scoliosis deals with the physical. Degree of the curve, names for the different curves (scoliosis, lordosis, kyphosis), and so on and so on. But what about the psychological?

Does anyone else find it "emotionally crippling", as in destroying their self-esteem, causing deep depression, and making them practically socially dysfunctional?

[LindaRacine]

Hi Shy....

It's really not uncommon for people with scoliosis to feel the way you do. It seems especially that way for males for some reason. Perhaps as females, we cut ourselves some slack in terms of the shape of our backs, because we're so often insecure, especially about body issues. Unfortunately, our insecurities probably only serves to drive a wedge between us and other people.

The one thing I can tell you as an older individual is that you'll eventually come to know that the physical self is so much less important than the emotional self. I can guarantee that the people who like you, do not care about the shape of your back. I have very few friends who are anywhere near perfect, but I never spend any time thinking about their imperfections. If strangers find you odd looking, I would try not obsessing about it. You'll never see most of them again. And, for those who you will continue to see, you can choose to make them know the good things about you.

Regards,
Linda

[so_shy]

Hi Shy....

It's really not uncommon for people with scoliosis to feel the way you do. It seems especially that way for males for some reason. Perhaps as females, we cut ourselves some slack in terms of the shape of our backs, because we're so often insecure, especially about body issues. Unfortunately, our insecurities probably only serves to drive a wedge between us and other people.

The one thing I can tell you as an older individual is that you'll eventually come to know that the physical self is so much less important than the emotional self. I can guarantee that the people who like you, do not care about the shape of your back. I have very few friends who are anywhere near perfect, but I never spend any time thinking about their imperfections. If strangers find you odd looking, I would try not obsessing about it. You'll never see most of them again. And, for those who you will continue to see, you can choose to make them know the good things about you.

Regards,
Linda

I know that how I physically look "shouldn't" matter, I sooooo know that. Yet, I have never been able to FEEL that. I just emotionally have been totally unable to not feel at peace with any of this. In fact, I get sick over it, as in looking in the mirror and being nauseated, or being outside and twitching all the time and even shaking because I just feel like it's practically impossible to conceal, the whole clothes wearing problem. And then when the comments, and sometimes nasty, mean remarks I overhear, well then I just break-out in physical symptoms too embarrassing to describe. The most I'll say is I become a twitching, shaking, excessively perspiring-dripping WET MESS. I mean I have so much tension even typing this now, and doing it early in the morning, while no one is up so I can't be caught writing about my problem, and looking over my shoulder, ready at any second should someone come in to quickly click off this site until it's safe again to write.

I'm amazed at how others with scoliosis survive and even thrive, especially those whose scoliosis is WORSE than mine.

I just feel like a monster at times.

When I was in school, the few "friends" I supposedly had, some who in all other respects were actually nice people, still would make the hurtful comments that just sucked the life out of me. How many times I had to hear (and still do but this is going back to high school) "There goes (my name) sitting funny" and "there goes (my name) walking funny" and also the times other students would imitate the way I walked or sat or looked, where they would actually hunch over their shoulders and mimic. I've even had insensitive doctors. My own orthopedic doctor would say when he walked into the examining room, "Ah yes, hunchback." As a teenager and young adult I told my psychiatrist about it, that the ortho doctor would use that term and he was in disbelief. And of course going to a swimming pool, well that's out, I last went swimming almost two decades ago. The clothes things is one major major major nightmare, but swimming, being totally exposed, that's out forever after what I heard people say the last time I went swimming 18 years ago.

I find it all very draining. To be honest, I have no life. I would love to just be able to get dressed, look fairly normal in a shirt, and just be able to walk the earth with some sense of calm.

I shouldn't be feeling this way, that's what the voice of logic or sanity is saying in my brain. But that doesn't stop the reality of how bad I jut feel about myself.

Thank you for listening. Letting me vent.