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View Full Version : Quantifying the impact of scoliosis on an individual



Amazed Jean
11th September 2004, 12:07 AM
Hey, great letter. Really I don't know all of you or even most of you but I am in total love with the first place in my life I've been able to talk about scoliosis and more importantly I can read all the communications going on between all of you and think how cool to be so relaxed with this disease. I often get prettty down about "IT" and there just aren't people I want to talk it over with. I managed to marry a handsome prince over 30 years ago and he listens but somtimes I just don't want to lay it all on his feet. Afterall, he's the one who makes my 4'8" jumble of bones feel like a grown up woman and he makes me pancakes with strawberries and whipped cream every single Sunday. I'd like to nominate him for Sainthood if we ever get that going on SSO. In the meantime,Oprah show sounds like a good place to start with us. I think they could make us all over - guys too and here would be the good part - we wouldn't have to show it to any audience. Cool. very cool even if i'm older than dirt.

Becky
11th September 2004, 09:43 AM
so relaxed with this disease
i wouldnt like to say that i or anyone else had a disease!

ivanleg
11th September 2004, 10:24 AM
How about aliment?
Complaint? condition? disorder? indisposition? malady?
Not to mention predicament, affliction, malaise.

Amazed Jean
11th September 2004, 02:39 PM
I refer to scoliosis as "IT". Sort of like cousin IT. My poor new orthopod who specializes in scoliosis keeps catching himself saying 'deformity". "Your deformity is only going to worsen etc" Then he stammers and looks embarassed. I admit IT isn't much better but the word deformity really bothers me too but I know that clinically IT is a deformity and a disease. Once in awhile I even just forget and let that darn old IT own me and I don't care how IT's referred to. I never mean to bother anyone by calling IT a disease. My pet peeve is when you know someone wants to ask me about IT and they just stare or stammer and look around the room. My IT is very visible so ask already! Get IT out in the open so I can relax.

tonibunny
11th September 2004, 04:34 PM
I call it a "condition" cos "deformity" is horrid (even if it is true), and "disease" tends to make me think of illnesses caused by bacteria or virii....

Becky
11th September 2004, 07:24 PM
I call it a "condition" cos "deformity" is horrid (even if it is true), and "disease" tends to make me think of illnesses caused by bacteria or virii....
Thats exactly what I would call a disease, and I wouln't say that scoliosis is a disease. A disease reminds me off something contageous.

Kayla
12th September 2004, 02:10 AM
Originally posted by ivanleg@Sep 11 2004, 02:24 AM
How about aliment?
Complaint? condition? disorder? indisposition? malady?
Not to mention predicament, affliction, malaise.
jeeze!! such big words :???:

Amazed Jean
12th September 2004, 04:07 AM
You know I just remembered that when talking about scoliosis, I'm pretty ok with most terminology and have been until that kids movie "The Hunchback of Notre Dame" . Little kids in the store would say Hey Quasi and there's a hunchback lady. Thank you Disney! Next maybe someone can do a warts movie or The MS man. Or something else not neat. Did I go see the movie - nope too close to home I guess. I polled my family. My mom says Jean's poor back, my daughter says her Mom has a spinal condition, and my husband says he always says my wife's scoliosis. So there you have it. No consenus here.

DublinPauline
12th September 2004, 10:31 AM
I hate the word"deformity".
My beloved obstretician five years ago liked to talk about me needing a caesarian because of my spinal deformity. And that wasn't the worst thing about him. :evil:

sins
12th September 2004, 11:40 AM
My obstetrician noted that I had a "touch of scoliosis" and if I had any pain and needed an early appointment to avoid sitting round but that was the only time he referred to it but didn't see the need for an elective c section.However on baby no. 2 when I had to have an elective section under general anaesthetic my "compromised lung function" was a big issue.........

By the way I class myself as having a spinal disorder. ;-)

LinnyLou
12th September 2004, 03:12 PM
I like to call myself "crooked" (not singulary referring to spine).

jfkimberly
12th September 2004, 07:21 PM
Ugh... "crooked" was one of the words on my list of words I wouldn't say and dreaded to hear. In fact, that was the first word to make the list, thanks to my then-cruel older sister and a stupid argument. I prefer to pretend there's nothing wrong with me unless someone forces me to explain, and then I tell them I have scoliosis (and if they come back with, "Oh, my [neighbor's daughter, cousin, best friend's sister, etc.] was just diagnosed with that!" I might get annoyed and go on to explain that mine was congenital and severe and nothing at all like their neighbor's daughter's case that won't likely require any treatment). I don't make casual references to it.

This is therapy, I tell you. I'm learning about anger I didn't know I had with every post I make.

Carly
12th September 2004, 07:26 PM
To me scoliosis is scoliosis- whether it is congenital or idiopathic, severe or small, pain or not. It still affects people the same way and should not be taken so lightly.

lindzi_11
12th September 2004, 07:33 PM
uhh just because your scoliosis doesnt need treatment does not make it invalid...

jfkimberly
12th September 2004, 07:39 PM
I know, Carly... and I certainly don't take it lightly... but I feel like the person who says that is taking it lightly. I usually don't talk about it, despite how physically obvious it is, so if they've gotten me to finally spit it out, I don't want them to come back with some distant acquaintance who has 10 degree curve diagnosed in a routine screening in gym class and has no problems with it. I don't want my co-worker to tell me about her basketball-star daughter who has scoliosis and is still able to be on her university's varsity team (with her implied "Now why aren't you out there over-achieving?"). I don't want a chiropractor to hand me his card when I'm in the middle of working the lunch rush at Taco Bell--as if he can realign me and make me all better! I don't want ... I don't want scoliosis.

Carly
12th September 2004, 07:43 PM
I understand that... I know it is hard! But it is like you are saying that because she only has a small curve, it is no big deal.... she doesnt know anything about it and who cares. But that small curve could turn into something serious so it is serious and can be a problem!

jfkimberly
12th September 2004, 07:45 PM
If the person with the curve was talking to me (or her sister, or mother... or someone who knew what the heck they were talking about), that'd be different. It's the distant acquaitance of the person with the alleged curve that I have a problem with.

lindzi_11
12th September 2004, 07:45 PM
I agree with Carly. =)

jfkimberly
12th September 2004, 07:55 PM
Lindz, I'm not saying that scoliosis that doesn't require treatment is not cause for concern. I'm talking about the exchange between me and someone-who-knows-someone-who-knows-someone with a slight curve. If the person I'm talking to had scoliosis, I'd compare notes and happily take advantage of an opportunity to talk to someone who understands the terms I use because they're going through it, too. But I don't want to hear about some person's daughter-of-a-friend-of-a-friend from someone who knows nothing about the condition, as a response to my case.

Blargh. I'm just making people mad, and I don't mean to. It's a situation you'll just have to experience one day to know what I'm talking about.

Carly
12th September 2004, 07:58 PM
Ok now i get a bit more of what you are saying....

You are not making anyone mad- just a bit confused! ;-)

lindzi_11
12th September 2004, 08:00 PM
yah kimmi ur not making anyone mad.

floralgypsy
12th September 2004, 08:04 PM
Scoliosis in whatever variant still means the same thing - a sideways curvature of the spine, and yes, everyone is entitled to feel concern whatever their curve. I do have to agree with Kimberly here though, in that her scoliosis that she has had from birth can not easily be compared to that of someone with a mild curve who doesn't require anything doing to it. That doesn't mean that a mild case of scoliosis is any less valid, but we have to appreciate that Kimberly has had hers from birth. Her experience is entirely different and isn't easily comparable to someone who developed a mild curve in their teenage years.

Kaja
12th September 2004, 08:08 PM
You are so good with words, Charlotte. I completely agree.

sins
12th September 2004, 09:42 PM
Scoliosis affects many of us in different ways.Some have mild curvature,some severe.No matter how small the curve it affects us from a cosmetic point of view in your teens when you're probably at the most vulnerable and yet exciting time of your life.It's tough to attend a social or school function and dread having to wear an evening dress.It makes no difference if you're male or female.Guys suffer the same as girls.Some have excrutiating pain and others escape without a twinge.
For most of you here you will be neither deformed nor disabled by your scoliosis.Unfortunately a significant number of us are, especially the older ones who had appalling medical treatment for our condition.We may not like it or like the way people describe it or refer to it.
It's horrible the way people stare at you at the store checkout or on the dance floor.It's horrible to find yourself fighting for a breath after climbing a stairs,it's horrible trying to find clothes that don't reveal your shape and battling the prejudices of people who assume that because you have a twisted spine that you also have a twisted mind.
It's easy to see Kimberly's point ! It's ridiculous trying to compare the physiological aspects of mild scoliosis vs severe.We've recently been made aware of two cases of young men with scoliosis.One has never been treated and has one of the worst cases seen in recent years and another in his late twenties who now relies on a ventilator to breathe and spends most days in hospital as a daycare patient.He's not expected to reach 30.How can we compare that with someone who has a 10 degree curve?
Every scoliosis patient will suffer from the psychological effects of cosmetic imperfection no matter how small the curve.However some will suffer major physical damage from their curvature and face a premature death.
On this site we need to accommodate everyone's needs and opinions.There's room all curve types and sizes.As someone said earlier in this discussion we're people not a condition and as long as we remember that we'll all do just fine.
Sins

Amazed Jean
12th September 2004, 10:30 PM
i'm still thrilled to have found this site to feel like I fit in somewhere. Scoliois ain't easy to live with and it ain't eay to talk about. No matter what the reason we all have it and it somehow binds us together. I want to say that I never mean to hurt anyone with something I say however I do get a little punny at times so don't let me pun anyone into being hurt. Hurting anyone isn't ever my plan. I appreciate all of you.

Joy
13th September 2004, 12:58 AM
Kim, I get mad sometimes too. It's not that I feel the other person's scoliosis was less valid or less hard on them, I just don't like how I feel like I'm weak or inferior because my curve progressed and theirs didn't. I mean, I've met people under observation who have definetly had a worse time emotionally then I have. I just don't like it when people make me feel guilty about having had the surgery. It's not my fault I have NF or that it caused scoliosis. It just happened. It's not like I wanted to have scoliosis or surgery! And it's not my fault I have pain sometimes either, or that I have problems with my neck/ shoulders. So what get me angry is when people say that scoliosis shouldn't cause so many problems or that maybe I'm just sensitive to pain.

I think disease is contagious and disorder is not. So scoliosis would be a disorder. But I'm not positive about that. But I tell people I have scoliosis if they ask and then if they don't know what that means I tell them. And if they're really curious I might show them my x-rays. It's important to me that people who are curious understand what scoliosis is. That way they can't say hurtful or stupid things because they're ignorant and if they say something mean I can get properly mad at them without feeling guilty.

gabrielle
13th September 2004, 01:00 AM
My curve is so low people do not know I have scoliosis. While my hips are way off course, my upper back looks pretty normal. Only with close observation has anyone detected that my shoulders are not level. These things are easy enough to camoflauge with baggy clothes (no doubt, we all probably have our share). So, I don't have people staring at me, or kids making fun of me. I do still know the pain- physical and mental. Yes, it's good to be able to "talk" with others who know the "wrath" of scoliosis. Praise be to all the encouragement, support, and especially the acceptance, by everyone here.

Pikey
13th September 2004, 08:10 PM
trouble is you cant change what you are and you cant change peoples prejudices .I lived with Scoliosis for a very long time and I still find it hard to come to terms with , I would like to say it gets easier with time but i have not found it does . Not only that the aches and pains get worse . I have been very lucky in my life with a great wife and great kids but I'm always still looking for acceptance from those I know or those I have just met , i crave to be accepted and probably try to hard to show people that I am as good as the next man .I often have bouts of depression that can be brought on by a comment from someone , a giggle or just a glance of my reflection . Scoliosis is something we have to deal with , I hope people can cope with it better than me because I'm crap at dealing with it . I hate it when people think you must be odd because you look slightly differant from others but what ever you want to call it disease , disorder , condition , i just know it sucks .

gabrielle
13th September 2004, 10:47 PM
I don't want to come off as some sort of know-it-all, but I've lived in a number of places in the US and one thing I've found everywhere I've been is that ALL people want to be accepted. I can only assume this is true world-wide. No matter what background, color, creed, beautiful, not-so-beautiful... all human beings want and need acceptance. I've been through bouts of depression I thought could only end with death. During one of my very low times my husband told me he believes everyone feels like they, alone, are a mess. I've read a number of sites online where people post their woes and discontentment with life. I think he might be right. It's hard to be objective when so much of life is subjective. No doubt, I hate having scoliosis, too. I've felt cheated by this condition many times, probably will again. I think, though, when I really look at my life in the big picture I can see where I'm not all that much worse off than anyone else. The whole human race suffers from the malady known as "imperfection".

Jessica*
26th September 2004, 03:35 PM
Well, I usually refer to myself as to having a spinal deformity. But I like to say Scoliosis is a condition, as conditions are subject to change :P
Ah well.

The impact of scoliosis on an individual is quite a touchy subject. As we all here (or most of us here) admit that there are days that we feel like utter sh!t and this comes from curves great and small. Then with a variable of age, when it comes to limiting activities or general health once again some of us do/do not feel like sh!t. But I do know that personally I was crushed during the first year from diagnosis because I had to lose something. But now that I've lived with Scoliosis 2.5 years I've come to accept the unavoidable, and focus on what I've gained instead. And all this wouldn't be possible if it wasn't for lil' communities such as this one...

Wow, I think I changed topics quite a few times in that paragraph.

butterflylr
28th September 2004, 07:22 AM
I usually just call it Scoliosis. ;-)

I don't feel I have a disease or anything like that. I think though if I had to choose a word I would call it condition though. One of the actual definitions of condition is: A state of health, A disease or physical ailment. So I think that technically makes it a condition.

I personally don't like to dwell on the fact that I have my crooked spine. Luckily though, my scoliosis is up a bit higher I guess than most so it doesn't show as much. I am not sure if that is true but when I was diagnosed they told me that. So fortunately I have not had to deal with the strange looks from people just because I look different. I am sure I would have a lot harder time dealing with it if that were the case. So if you have to deal with that then this is for you :squeeze:

My biggest gripe is the pain! I have pain ALL the time and I am constantly cracking and stretching. Nobody understands either. They come to me with statements like, "oh my back hurts a lot too." I highly doubt that it hurts like this. Even my husband didn't fully understand my gripes of pain until I just recently received my x-rays from my old chiropractor. He finally saw the reason for all of my whining for back rubs and stuff. I just wish I could have the relief of a normal spine for ONE day! I can't even imagine what a day without pain would be like. I guess "lucky" for me, I have some nerve damage so I have less feeling in the upper right of my back. So much for my luck! I would rather have the kind of luck to win the lottery. :D

One thing I can say though, this whole ordeal can only make us stronger. Always remember that. Remember to smile and stay strong!

:bounce: <--- If nothing else can make you smile sometimes, this should be able to&#33; SO CUTE&#33;

nutmeg
28th September 2004, 08:12 AM
I think condition is a good word, without the negative connotations of disease, and deformity. I don&#39;t personally mind describing myself as deformed, but I don&#39;t think anyone should use it to describe other people. What really upset me a few years ago was when someone on another scoliosis forum stated that "Scoliosis is a disability". I know that some people are disabled by their scoliosis, but not all of us.

I&#39;ve not really been that worried about the way scoliosis affects my looks. Since most of my scoliosis is behind me, I don&#39;t see it. My shoulders are very level, my hips are only a little uneven, and although my left ribs stick out a bit in front, and my right ribs stick out to the side, as well as behind, neither of these are really visible through clothes. Also I&#39;ve seen plenty of people who appear to have really severe scoliosis, until they change position and I realise it was just the way they were siitting/standing&#33; Only one person has ever told me that I looked bad because of scoliosis - that was the surgeon who wanted to operate on me.

I&#39;m very fortunate in that despite having what most doctors would describe as a severe curve, it&#39;s not painful, and so far (age 46) the only way it limits me is that I&#39;m not tall enough to reach items off the top shelf in the supermarket.