Do you really living with PWS? - Page 4 - Vascular Birthmarks Foundation Forum
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Old 05-04-2014, 08:01 PM
Stelleir Stelleir is offline
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Join Date: Oct 2013
Posts: 2


Nice thread!

I'm flying over the Atlantic as I'm writing this - thought that was cool to mention.

I am a 20 yo guy with a PWS only on the right side of my face: it is on my nose, below the eye, above the lip, on my cheek, and the right of my eye.

I don't hate it, as some people have declared, but I do hate that I can't deal with it really.

I started wearing Dermablend four months ago and my life completely changed: people are friendlier, I am more confident, my social anxiety is greatly diminished, and I get much less sad about it.

Make-up covers my PWS completely, but it doesn't look even or very good. However, I am much more assertive then most people when I'm wearing it, as I know I have put significant effort into making my face more pleasant for other people (at least I hope so), and less pleasant for me. It takes 10-15 mins now to put on make-up, but it's still money, inconvenience, and time. No huge deal though.

I could be extremely happy with this life if I didn't have the need for romance, intimacy, sex, etc... I think the PWS makes me less appealing, and I am not even close to going to bars to get a date, as I will feel humiliated by a rejection.

As I also happen to be gay, getting myself a boyfriend will probably involve going to gay parties or smth, as finding gay people in everyday life is hard. And yeah, when you go to a gay bar other people do know what you're looking for, and for some reason I am extremely bothered by what others will think then, and by the idea that I won't be approached and rejected.

I guess part of my reluctancy to potentially subject myself to rejection it comes as my self-esteem is rather high in some aspects. Ive been extremely successful for most of my short life. Among other things, I was the youngest from my small (2 million) country to win a medal at this prestigious math competition.

Anyway, I'm pretty sure I would love to date a boyfriend with a PWS (provided that he likes me too :P ). I guess I will need a little time to stop being distracted by it, but the idea of being with someone like myself, who understands and all, and loving that someone like I wished I was loved seems extremely romantic to me. :3

I am bothered by my PWS though, and it proves to be a great escape from the real world's responsibilities. I used to loose myself in self-pity (or was it self-compassion?) and used the self-inflicted sorrow as an excuse for not completing my duties. I am better then ever now (still far from perfect, though :P ) as I started undergoing psychotherapy. It might tremendously help if you can afford it, land a good psychologist, and invest some effort into working on yourself. If you don't want to pay for it, well, you can always earn more money. Or, simply seek out supportive friends and try to surround yourself with people that make you feel good.

A tip from my psychologist: when meeting new people, try to become comfortable with immediately introducing the elephant in the room. Once the other person knows you're comfortable with it and what it really is, they will stop wondering and feeling awkward and will more easily focus on the conversation (i.e. getting to know the rest of you).

I want to reiterate that if I find a guy naturally beautiful, I'm sure I'll quickly (if not immediately) find the PWS nothing but beautiful, cute, and sexy.

Also, after I started wearing make-up, I realized a lot of people are very socially awkward when you meet them even if there is ABSOLUTELY NOTHING unusual with the way you look. I then realized I was attributing too much of the social awkwardness to my birthmark, and that greatly improved my self-confidence.

I became self-conscious of my birthmark when I was 11 and just entered puberty, and for all parents out there, kids need a lot of understanding, talking about it, and emotional support in this period (something I didn't get :P ). One of my comping mechanisms were to be rational about it. I try to look at people as rats, let's say. We do dumb stuff all the time and feel dumb stuff all the time, that's silly and ridiculous. Everything about the birthmark seems like that to me. Knowing that doesn't make my emotions any more rational, but it helps a good deal. Rationally speaking, we are all creating a lot of fuss about something that is equivalent to putting red paint on a person's face. Why is that such a big deal? It isn't, its just how it's viewed by our silly human brains. But, we are emotional, not rational, beings, so I understand and sympathize with all people experiencing difficulties (including myself) because of it.

Other coping mechanisms were trying to occupy my brain with something productive, something else, as much as I could. Thus building my personality, intellectual skills, and even physical appearance, because improving myself makes me feel good about myself and greatly counters all negativity that might arise from having a birthmark.

Also, if you are somewhat attention seeking (like I am ), you can use that staring to pretend you are someone important because, in the end, so many people spend precious time of their lives thinking about / looking at you, behaving like silly little beings distracted by something trivial; while you with you heightened (you are pretending you're a great VIP, remember?) consciousness, self-control, confidence, and strength, walk gracefully, entertained by the silly nature of our species.

Thanks to everyone sharing - for me there is nothing better than feeling connected and learning from others.
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