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Thread: what to say when meeting new people

  1. #1
    Join Date
    Mar 2004
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    Illinois
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    24

    what to say when meeting new people

    i'm looking for some advice on what to say when i meet new people. my scoliosis is pretty visible but most people don't know whats wrong with me. my family and classmates and friends know about it since i've had it since i was three so i don't know how to tell new people. i never really thought about it until my doctor talked to me about how i bring it up. i was like, I never do. should i just let people assume whatever or should i tell them something. since i'm going to be going to college and meeting new people in the near future i'm interested in this. thanks for your help!

  2. #2
    Join Date
    Mar 2004
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    4
    personally, if they don't ask don't tell. It's your business and not theirs, then again if they ask, it's up to you if you want to tell them... it's your own choice. otherwise if they don't bring it up, you shouldn't, don't worry bout it. Only a few friends of mine know and not even my boyfriend does, not that i'd think he'd care anyways. i wanted to tell my friends obviously and get support but my boyfriend doesn't recognize the signs so i never told him...
    so really the decision is up to you...it is your own personal, um, thing. i don't know the word to use. keep it close, for it is special and makes you unique, even though it not always is agood thing... it is who you are.... so take my advice or not...it's all up to you!

    don't worry, be happy!
    -jewel

  3. #3
    Join Date
    Jul 2004
    Location
    sydney
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    5
    i totally understand your position. i havent told my boyfriend of two years that i have scoliosis because he might think its a bad disease or something because he hasnt been educated about what it is.. ever since today he hasnt noticed it, although eversince i have been diagnosed, only 3 people have noticed it when looking behind me.. most of the time i get away with it, since i have to have a normal figure when working where i work.
    so you dont have to tell anyone your personal info if u dont want to.. even the closest people in your life dont have to know.. (only if you feel it is right to tell)..

  4. #4
    Join Date
    Jul 2004
    Location
    Northern California
    Posts
    255

    what to say...

    Hi! I'm older than you guys now (28) but reading your post made me think of when I was at college and meeting new people etc. My back doesn't look too bad, but I'm really self-conscious about it. Anyway, I've found that most people have heard "curvature of the spine"--or if they haven't they can work it out the idea pretty fast--and if I said something like, "Oh, I have a curvature in my spine, it makes my ribs stick out somewhat in the wrong place" then they would get the idea. You don't have to give too much detail, but sometimes it's nice to let people know.

    Hope you have a great time at college!~~

  5. #5
    Join Date
    Mar 2004
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    1,140
    I totally agree that you shouldn't have to explain to everyone you meet about the scoliosis - it really is none of their business. However... having said that, I really think that "significant others" should be made aware of it. What if you find someone that you want to spend the rest of your life with and perhaps start a family. I think it's only fair that they should know about it. There are no guarantees that you will pass on scoliosis to your offspring - the risks are there.

    I have always known that my mother-in-law had "back problems". No one in her family knew she had scoliosis until about two years ago ( after my daughter was diagnosed with it ) My sister-in-law was diagnosed about 10 years ago with scoliosis at the age of 16 - nothing was done because it was too late for her. No connection was made back to her mother's scoliosis because nobody was aware of it - hence no hereditary alarms went off. I don't even know what degree curvature she has because the whole subject is considered very "hush hush".

    I know my mother-in-law has severe scoliosis because she can't even walk a block. If I had known that this was something I should be looking out for in my children - I would have really appreciated it. Caught early, scoliosis can be successfully treated - especially in babies. Instead I woke up one day to find my baby's back twisted and mis-shapen with a 60 degree curve. Today she is still in casts to try and straighten her out. I feel very bitter towards a lot of people - not only the pediatrician who failed to tell me she had scoliosis, but also my in-laws for keeping me in the dark about this disorder. I can't change the past, I can only concentrate on the present and hope that tomorrow brings a better day for my daughter.




    Celia

  6. #6
    Mary Lou Guest
    Celia--

    I'm sorry to hear about your daughter's back. My daughter is 13 and I know how rough it has been for us, so I can only imagine how rough it is for you with your daughter being a baby.


    Please try not to be mad at your daughter's pediatrician. My daughter's Scoliosis was picked up by her doctor at a routine yearly exam, yet I strongly feel that she started with Scoliosis about three years before she was picked up. How do I know this? I only know this now that my other daughter is 11 and I can compare their height growths/changes from their birth until today. I think had you known their was a family history, your doctor would have been examing your daughter for Scoliosis. Who ever thinks their child will have Scoliosis? Why should your doctor check a baby if there is no family history? There is no family history that I'm aware of in our case, but at a certain age our doctor started checking both of my girls and we only found the Scoliosis once it was bad enough to make physical changes in her appearance.

    As for your mother-in-law-I totally understand your anger! Why do people feel it is necessary to keep everything a secret? My daughter was diagnosed over a year ago and we are in the planning stages for surgery. Do you know that most of my husband's family doesn't even know my daughter has Scoliosis? My daughter also has Kyphosis and her orthopedic doctor says that it is from a condition called CMT. CMT is a condition that has effected atleast four generations of my husband's family that I'm aware of. Several of the people effected with CMT in the family are young girls (ages 10-12) who are more likely to end up with Kyphosis/Scoliosis since their is now a family history of CMT and Kyphoscoliosis. I've been telling everyone I can in the family about the CMT/Kyphosis connection hoping someone will mention it to their own doctor and maybe catch a case of Kyphosis or Scoliosis sooner rather than later like in our case.

    Please just know that you aren't in this alone. E-mail me if you need to talk.

    Mary Lou

  7. #7
    Join Date
    Sep 2004
    Location
    Baltimore, MD
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    401
    Hi,

    My daughter is 13 and her curvature is obvious to me, but no one else really notices. My personal experience is that it makes people uncomfortable when a stranger harps on about an illness or personal problem or issue, so I wouldn't let the scoliosis define you as a person, or make it the first thing you bring up when meeting a new person. I would, however, find a way to let your close circle of friends know about it.

    I don't know if you have any pain, but my daughter introduced the subject to her closest friends on a camping trip when her back was killing her. She didn't complain the whole time, she just took a couple of Advil, and mentioned what was going on. Word went around the little group pretty quickly, and now they look out for her. If they see she's in pain, they'll carry her book bag, or offer her some support, but no one make a big deal out of it.

    My daughter is not " THE GIRL WITH SCOLIOSIS"... She's " THE AWESOME FRIEND AND COOL KID" who happens to have scoliosis. That my advice from someone on the outside looking in.

    Have a blast at college!
    Last edited by susannajon; 10-30-2004 at 10:16 AM.

  8. #8
    Join Date
    Mar 2004
    Posts
    1,140
    Mary Lou,

    There are days when I am VERY angry. I feel like giving my mother-in-law a piece of my mind - however, I keep it to myself. She's in denial... even today. She can't believe that scoliosis can be hereditary. She told me the other day how amazing it was that I took such good care of my-self during my pregnancy with my daughter and still ended up with such problems. How could this have happened ? she says. Like, H E L L O - your scoliosis genes are in my daughter !!! She must think I'm some complete moron, because the way she talks to me is really unbelievable.

    We found out recently that my husband also has scoliosis - his belly button is off centre. He's afraid to get an x-ray to see how bad his back looks. He's in constant pain, and he'll probably end up like my mother-in-law - unable to walk a block. He's very athletic and I know it will be a very big shock for him. I want to help him before it's too late - but he won't listen

    My daughter's scoliosis could have killed her. Her ribs would have restricted the growth of her developing heart and lungs - this is serious stuff !!! There are people out there with infantile scoliosis with shortened life spans because they didn't get timely treatment. I think the whole problem is one of widespread awareness. Most people (including my-self at one time) don't know what the signs and symptoms of scoliosis are. Children with scoliosis can look perfectly healthy and the scoliosis is only caught in the advanced stages - when it's too late.


    I wish you strength in your daughter's upcoming surgery. I hope everything goes smoothly and she heals quickly. Keep me posted, OK ?





    Celia
    Last edited by Celia; 10-03-2004 at 11:12 AM.

  9. #9
    Join Date
    Mar 2004
    Posts
    1,140
    The point I wanted to make before I went "off topic" is that forgetting about your scoliosis/pretending it doesn't exist or keeping it a secret won't make it go away. All the people around me that I love dearly are doing just that. As you can see from my example, scoliosis may show up in your children or grand-children. If you keep an eye out for it - you won't end up in the same boat I'm in. Caught early, it really is quite manageable.

    Oh yeah, have a great time at college and live your life to the fullest !!!!!





    Celia

  10. #10
    Join Date
    Sep 2004
    Location
    Ontario, Canada
    Posts
    97

    what to say

    hi dancercick15,

    my friends also know that i have scoliosis. although, they didn't until i happened to bend over one day and they saw the hump. nturally, they asked so i didn't mind telling them. actually, last year in sixth grade my whole class found out htat i had it when i recieved my brace. they all asked. when i meet new people, unless they ask me what is wrong with my back, i don't bring it up. usually when i tell people if they ask, they don't really care and they get back to what they were doing before. i hope this helped you. bye

    ~*Lauren*~
    Braced for 5 months
    Decided on surgery with 65 and 54 degree curves
    Pre-op curve measurements were in the 70's and 80's
    Surgery on April 26th 2005
    Fused from T3-L4
    Post-op curve is 15 degrees

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