Life with an unmanagable PWS - Vascular Birthmarks Foundation Forum
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Old 05-01-2012, 05:22 AM
kaelinja kaelinja is offline
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Join Date: May 2012
Posts: 8
Default Life with an unmanagable PWS

Hello everyone, (please read to the end before coming to a conclusion)
I am new to this site today and I wanted to introduce myself. I am a 26M with an extensive PWS on my right arm, chest, and back. It has been the bain of my existence for a long time, but it has motivated me in the right direction regardless of how it makes me look. I has always been tough over the years because of how it has affected my life, as I am sure that you as the reader that you are can empithize with. I can't go anywhere or do anything without it being the focus of attention for strangers, and for a long time it had a detrimental effect on my love life and life in general.
For those of you who are younger, and are seeking help, I for one can tell you that there is nothing anyone can tell you that will help. No amount of advice that your parents, doctors, or friends can take away the feelings you will get everytime a person stares or points at you. This is the bad news.
The good news is, you will learn to harness those feelings. You will learn to take all the rejections from the opposite sex and harness your feelings into something good. You will learn to deal with stuff that none of your friends and family can even remotely understand. And you will be the better person than all of them.
The reason I can say all this is because I have done it. I have lived the life, and I can say I am better because of it. When I was younger, support groups like this did not exist. A coalition of doctors that can exist because of the internet was not aroudn. You are lucky, trust me, in so many ways that this resource is here for you. Learn as much as you can, it will help you succeed in life.
To bring this little soap box story back around, I will sum up how I have been able to harness my difference into success, so maybe it can give you an example. I hit the books as a kid, but I balanced it with athletics and social opportunities. I did not hide away because I was made fun of, I made fun of myself in a good way so that it was no longer ackward. If you don't let the cruelness of children bother you, and join them in joking on yourself it will show them you don't care what they say. Do this and BE CONFIDENT with yourself. As a teenager I let my PWS get to me, and I allowed others to bully me, let me say that again, I ALLOWED others to bully me. It was my own doing because I was not confident with myself. I was always a good athlete, so by having solice in sports I was able to get through middle school (which is hell for everyone, even the popular kids). I progessed in academics and athletics in highschool, and even though I was not popular because I was different, I was still known by everyone. I made friends in every social circle and diversivied myself as a person. I was not exactly a big hit with the girls in my highschool, but those that gave me a chance, I made the best of it and learned how to be a better person. It is just as hard for your significant other as it is for you, you have grown up with your PWS, they are still getting used to others staring at you. Allow them a growing period to get used to it, and if they can't, do not be mad at them. I was able to learn from my high school social engagements, sports, and studies. After high school I went on to play college football, again it was my outlet. With all the social skills I learned in high school I was able to be friends with a wide group of people in college. After college, I went on to graduate school while I worked as a bartender (again, good social skills). Now a few years later, I am in the Air Force flying C130s for a living, married to an extremely gorgeous woman (who is pregnant with our first child), and I know that all that crap that I went through over the years was completely worth it.
The summary of all this is don't let others hold you back, don't let them demoralize or bully you, and use your difference as a catalyst to achieve greatness. Through dedication and will power, I have a graduate and undergraduate degree, a beautiful wife and family, and a job that is better than any of those who made fun of me as a kid. If you allow others to hold you back, then it will be your fault when you are unsuccessful, but if you learn to adapt and overcome your difference and use it as a benefit and not a boulder around your ankle, then you will succeed.
Please feel free to reply to this post if you need help at any time. I have lived around the world. I have seen and dealt with a lot, so hopefully I can help you. I have attached a few pictures from over the year so they can give you an idea of how large my PWS is and how happy you can be with it. Hopefully this post will help you, stay positive, and good things will happen.

Joe
Attached Images
File Type: jpg Dun River Falls.JPG (24.2 KB, 0 views)
File Type: jpg Flight Line with Abby (9).JPG (56.5 KB, 0 views)
File Type: jpg Joe Abby Good.jpg (43.9 KB, 0 views)
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