Talking to Others

A dear reader (whose daughter has a similar stain) asked me the following question:

“…I do struggle with how to respond when people ask questions about her face, especially after a treatment. I want to educate them, but at the same time, I don’t want to be judged. I don’t think the average person understands how extensive these port wine stains become with age and without any treatment. Do you have any advice on how you respond to these types of questions?”

Why, certainly. 🙂

First, don’t worry; there will always be people who disapprove of your decisions. They can’t do anything about it, so let them stew.

Second: my rule of thumb is to always (always!) strive to make the other person feel comfortable. Not only is it kind, but in our cynical culture it’s also unexpected, and therefore disarming to any potential jerks. (In other words, if they’re expecting me to be defensive and I’m not, they soften up immediately. Works like magic in most of life, actually.)

So, kindness is key. But how do we make others comfortable when we’re toting a small child who looks like she’s been in a barfight? And in only a quick minute or two of passing conversation?

I’ve found myself using the following lines the most – they’re simple, they sum up the problem quickly, use imagery that people understand, and are casual & humorous enough to put people at ease. Sprinkle them into the conversations as you wish:

• “Oh, she’s fine, she just had another laser treatment for her port wine stain.”
• “It’s a proliferation of blood vessels – basically, they never got the signal to stop growing in utero, so they just keep growing, and growing, and growing.”
• “The laser zaps them – they heat up, explode and die. So then we can zap the next layer – there are a TON of them.”
• “It’s like weed-whacking – those vessels are constantly growing, we’re just beating them back. The sooner, the better.”
• “Yep, as she grows, the blood vessels keep growing with her. The whole thing will get thicker and darker and even nodular over time. It’s crazy!”
• “It’s not a big deal, we just have to keep weed-whacking for a while, that’s all.”
• “We’re going in for another zapping next week.”
• “I think it’s pretty much the same thing they do for varicose veins.”

The ‘weed-whacking’ analogy clicks with people – they suddenly ‘get it’ that this is a long-term process against constant growth, and it makes them smile. (Who hasn’t battled weeds in their yard?)

‘Zapping’ also sounds casual and surprisingly noninvasive, and makes people smile. (What kid hasn’t shuffled their stockingfeet on carpet and zapped a door handle?).

Pointing out the relation to cosmetic surgery seems to make people more comfortable that this is a simple, noninvasive procedure.

When you speak with easy confidence and a smile, rolling your eyes at how these blood vessels just keep growing (and growing, and growing), waving your hand when you tell them “Oh, she’s fine,” and shrugging when you tell them she’s going in for another zapping soon, they’ll usually relax. You’re cool with it, they can be cool with it, too.

When you’re with your close friends and confidants, you can relay your anxieties, fears, and worries – after all, this is your daughter and there’s a lot to worry about. But as long as you’re in casual conversation, just make people comfortable, and you’ll find that most respond with kindness.

Posted on December 17, 2013, in 3. Addy Stories & Experiences and tagged , , , , , . Bookmark the permalink. 6 Comments.

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  2. Thank you so very much for your wonderful advice and insights. It makes me feel so much better! Happy holidays!!!!
    Felicia

  3. Hi, I came across your blog last week when a friend of Adelaide’s grandmother pointed me to it. I’m 42 with a PWS, and started treatments at 19, although 1-2 treatments/year was not enough to really make it go away. I would say your responses are “spot on.” It’s really not possible for strangers to understand why you’re making that choice for your daughter, and it doesn’t get any easier for me to explain the surgery now that I’m a responsible adult making my own choices. People do seem to guess that it’s expensive/elective/painful/cosmetic, but they just can’t relate to the rest of the experience of PWS patients, which is what drives decisions.

    When I was younger, the PWS was a part of me that I was somewhat torn about getting rid of. It got quite dark over time, though, and now I’m doing all I can to stop the bumps from appearing, getting more treatments before my skin is too old to respond. I even had one bump surgically removed as it was impossible to cover and was in my line of sight.

    Also, back to the original reader comment about how to respond when people ask about the treatments. It may be a consolation that you would also get judgments and uncomfortable comments from other people if your child *weren’t* getting treatments. I know my parents did. I think in the best cases commenters are really trying (too hard maybe) to put themselves in your shoes, and sometimes it’s just idle curiosity. Some people are utterly lacking in social grace, but your approach works well with them. Sometimes the comments can take the wind out of your sails, but make sure it’s brief, and talk to your child to acknowledge her feelings too.

    Ginger

    • Thank you so much for your insight! I love hearing about your experience – thanks for sharing and encouraging! Please feel free to share your thoughts here any time – I know other parents will also be glad to see them. 🙂

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