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how does your brace make you feel?

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  • how does your brace make you feel?

    Hello! My name is Stefanie Wade. I have had scoliosis almost all of my life---was diagnosed at age 5. I wore a back brace (Boston, I think. No one ever really told me what one I had) from age 6 to age 15. Through talking with others who wore a brace, I realized my experience was not all in my head. I really hated it and felt like a freak in high school. Even though my brace was under my clothes, I felt that everyone could see it. I felt like no one would want to hug me. In P.E., when changing for swimming, someone even said, "What the *#@ is that?" when she saw my brace. I wanted to crawl into the locker.

    I realize now, 14 years later, that I wasn't some monster. However, I know that adolescence is the hardest time for people, in terms of how you feel about yourself, and especially your body.

    I am now working on my doctorate degree in psychology. After thinking over my experience, and talking with others, I have decided that I want to write my dissertation about scoliosis and body image. I want to see how others feel about their bodies, especially since their diagnosis of scoliosis and wearing a brace. I have asked permission from the National Scoliosis Foundation to see if I can ask you all for help in completing some surveys about body image and self esteem. I am still waiting to hear from someone.

    If this all works out, I would love everyone's help. Hopefully I will be able to learn something new that will help teenagers feel better about wearing a brace.

    It is so awesome to see a message group like this! I wish it was around when I was wearing my brace. You all need to support each other. I hope to be able to conduct my study and get your help!

    Stefanie

  • #2
    hi

    I'll help with your survey if you need questions answered. I was diagnosed at age 4-ish and got my brace at age 5.
    > Diagnosed at age 4
    > Braced at age 5
    > 35 degree curve somewhere, sounds funny but yes, I forget where...
    > Avid horseback rider

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    • #3
      When I was little, it was easy, cause I didn't know anything different and saw it as the most normalist thing in the world, was even kind of proud of it and would show people at every every oppurtunity

      Older.....adolescene a lot, lot harder, lots of politics behind the brace (couldn't get if for six months due to hospital politics) so we'd basically run out of time with my back, and I basically wore it for 2 years ( 11 to 13) for no good reason. So I wasn't hapy wearing it....not that it stopped me doing anything I wanted to do thou

      Alison

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      • #4
        I'd be happy to help you with your study as well. Good luck!
        Jennifer

        26 years old. Diagnosed with severe Scoliosis/Kyphosis and CMT at the age of 8. Have had a total of 6 surgeries, 4 on my spine and 2 on both of my feet. Including rod removal surgery. I am fused from T-2 to T-12.

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        • #5
          Hi Stefanie,

          I have mixed emotions over my brace. I wore it for just over a year, for 23 hours a day (well I was supposed to). Not only did the brace create physical trauma on my body, but it created emotional havoc on my life as well.

          I got my brace in grade 8, and although some people thought it was cool, for the most part it just limited me from doing the things I enjoyed. A lot of kids talked about me, when my doctor pulled me out of gym class (instead I had to do projects on scoliosis), and although I didn't mind...a lot of kids felt that I was being given *special treatment* and such.

          The brace caused me to have low self-esteem and be very self-conscious about my body. When I look back, I had nothing to be self-conscious about...it was all in my head.

          I assume that some people reach a level of comfort when they wear their brace, but I never hit that point. I felt it was really hard to breathe normally in it, and it caused unbearable moments of pain.

          Although bracing can be benefical to some patients. If I was given the choice again, I would skip the brace and proceed directly to the surgery. I feel that the bracing in your teen years might be more detrimental to your image then other methods could be.
          Jill

          Diagnosed in 1998
          55 Degree S Curve
          Idiopathic Scoliosis surgery in 2000 in Vancouver, BC
          Performed by Dr. Stephen Tredwell

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          • #6
            Hey Stephanie,
            I would be happy to help you with your research. I was diagnosed with scoliosis at age 10 (5 years ago). And was put in a brace about 2 years after being diagnosed. It was a boston brace 16 hours a day. I had surgery in 2002 and am now back in a brace 18 hours a day. It really stinks having to have a brace in high school. I always feel selfconscious. I feel like everyone is looking at me. And I feel embarrassed when I have to sit on the floor or if I drop my pencil and have to attempt to pick it up. anyways... yeah let me know if you need my help cuz I would be more than happy to help out!
            Courtney
            Courtney
            Age 16
            Boston Brace 1 year
            Posterior surgery December 12, 2002
            Back in a boston 18 hours a day.
            Maybe done with brace in November 2005
            To visit my website and read my scoli story click HeRe!

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            • #7
              hi id be happy to help if i can got my first brace at age 7 and had surgery at 15

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              • #8
                hi metalman,
                i wore a brace as a teen and my daughter who is now 15 was braced as well 3 years ago. She refused to wear it in public and just had surgery 5 months ago. So if you need some help let us know, i'm sure we can give our input especially my daughter's views on how she felt about the whole self-esteem aspect of it.
                Jennifer

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                • #9
                  Stephanie,

                  I really hope you get to do your study, as body image in scoliosis is a very important, yet under recognised area in research. I studied the psychological impact of scoliosis for honours in psych last year, and found that body image was the psychological factor most effected by scoliosis. I wore a brace for two and a half years at school, and feel that I have become an entirely different person because of it (not that that's bad). For a long time I thought that I was going mad, and realised that I had experienced some of the symptoms of Post Traumatic Stress Disorder during that time. Even though many of us realise that we are lucky that something can be done about scoliosis and that there are other people worse off (you only need to watch the news), I think that it is important to vent your feelings, otherwise you just end up with more physical symptoms. I used to write and play alot of video games (my favourite was blood omen, in which the main character was unjustly murdered and came back to exact revenge: sound a little familiar?)

                  In terms of my body image? I never buy clothes from the store and make my own. My surgeon was very cold and unfriendly, I remember how the light used to reflect off his glasses so that you could never see his eyes. While he was the best doctor in my area, he knew nothing of what it was to be a teenager wearing a brace (especially a girl). I think counselling should be mandatory for all patients because any treatment for scoliosis is quite involved.

                  Please let me know if you begin your study, I would happy to complete questionnaires.

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                  • #10
                    Stephanie,
                    I would like to participate in your surveys also whenever you get started. I had a fairly traumatic experience wearing my brace, possibly b/c no one ever helped me deal with the emotional aspects. Adolescence is a tough time anyway, as we all know, and to be the only one in school wearing a brace (Milwaukee) there was no hiding it completely under my clothes. I think I spent the first day wearing it to school crying in the bathroom because no one said anything, they all just stared. Rumors flew around school-like I got injured on the balance beam or some other such accident. One girl wouldn't let me in the girls p.e. room because I was "handicapped". I eventually got on with life, participating in sports, even having boyfriends! but I was always very self conscious. One good thing though, between the brace moulding my body and all the p/t excercises I had one heck of a nice figure when it came off!!!
                    Flowerpower

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