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Old 10-26-2006, 11:59 PM
sweet pea sweet pea is offline
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Join Date: Jul 2006
Location: Southern California
Posts: 111
Default people are mean

Today hasn't exactly been the best day. I have lymphangioma and not many people know about it. I tend to keep it a secret since it isn't in a very public area for every one to see. A few people at my school found out about it last year when i missed a week of school due to recovery from surgery. Though for the most part people dont know. I play volleyball for my school and really enjoy it. Though today it happened. Its what i was always afraid of. While i was changing in the locker room at school someone noticed my lymphangioma. They made a comment and a bunch of people turned and looked. One girl said that i looked deformed and some other stuff. As i looked around i could see people quietly talking about it. I was humiliated. Why cant poeple just treat me like im normal. Can't they realize that im emotional about their stupid comments. Dont people get that it hurts when you call some one deformed. I just dont get people.
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Old 10-27-2006, 03:19 PM
missy missy is offline
Join Date: Apr 2006
Posts: 1,794

I'm so sorry that happened to you.

As I've gotten older, though, I've come to realize that everyone has something. Something that sticks out funny, or sticks in funny, or stuck to them. I just walk around hoping no one sticks it to ME LOL

As difficult as it is NOT to tie your self image to what you think your body looks like to other people, try not to do that to yourself. The one girl who said you looked deformed probably also has some part of her body that she's unhappy with and would rather lash out at you than have people looking at her. She was just rushing to get in first.

It's easy for me to say, I know. Harder for you to do.

Want a hug?? ((((((sweet pea))))))


PS... she probably has some hidden cellulite!!
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Old 11-01-2006, 09:04 PM
hankbartenbach hankbartenbach is offline
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Join Date: Oct 2002
Location: Nebraska
Posts: 533


I am so sorry that happened to you. Being that I have a facial PWS I get those kind of comments weekly. I have learned over the years how to not let the comments get to me, or turn the persons words around on them to make them look like a fool for asking the question or making the comment.

Don't let the comments keep you from doing what you like to do in life. Those people are the ones with the problem for pointing out other peoples problems when they have their own they should address.

Hope this helps and keep your head held high.

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Old 11-02-2006, 03:52 AM
Lisa_99 Lisa_99 is offline
Join Date: Mar 2004
Location: Madison MS
Posts: 48

Sweetpea !

yes people can be soo mean and inconsiderate. my daughter ( now 17) has PWS on her complete left torso to her toes. She also has KT ( a vascular syndrome which was diagnosed at age 11. She's been an active all star cheerleader and danced in front of complete strangers in a crowd. I have to admit I worried sick about how will she handle issues... how will she hold her confidence as she matures... and basically her philosophy is "hey it's a birthmark, it's part of me, I would not change it and that's that!"

Please remember that 9 times out of 10 when someone reacts in an agressive way to you it is usually because they do not really know what to say.... and so they say something attacking or just plain ignorant. That my dear is their failure and issues not yours!

Stay positive, strong and just have a simple confident reply to give if needed during those time.

Good Luck to you!

Addie's mom
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Old 11-04-2006, 01:07 AM
Posts: n/a

People really can be nasty. Just say what it is confidently, and make yourself sound smarter than they do. If they see that it doesn't phase you and especially if you turn the tables on them and make them feel like the oddball, they'll (hopefully) stop bothering you.

I know it's hard (I'm 16 with a hemangioma, still), but honestly, they don't matter. If they can't accept it, it's their problem. You can be a wonderful person without their approval!

I'm sorry that there isn't much I can do. Good luck dealing with the nasty highschool kids!
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Old 11-04-2006, 05:08 AM
nickbar nickbar is offline
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Join Date: Aug 2003
Location: Pacific Northwest
Posts: 1,054

Ignorance is the biggest problem when people say stupid things. Lets face it...if she knew what an LM was...if she knew your pain...she'd NEVER say anything. Maybe hand her or others information on LMs next time they "act up"....educate. I totally agree with the above posts... the girls have the problem, NOT YOU!!!!!! Someone forgot to teach them how to act NORMAL....not like a fool.

Corinne Barinaga
VBF Director of Family Services
vbfadvocate @ live. com (no spaces)
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