Questions about children's health

[Slartibartfast]

One of my friends has a son with a very rare and very severe (= almost always lethal before adulthood) medical problem.  Her son is otherwise a typical five-year-old boy, but he already has some physical issues which make it obvious, particularly when he's tired, that he's got something wrong with how his body moves.  She gets questions about it all. the. time. from people who have no business asking - and since his condition is so rare, there's no way to just say "Oh, he's got X."  So if she does explain, she has to go into the whole spiel about what X is, and people have questions, and they find out that her son is probably not going to live past his teen years, and they have more questions about that (both about the disease and about her parenting choices).  My hat goes off to her - she's doing a fantastic job being a mom, and I can't imagine taking on the challenges she has.  I also can't imagine how I'd stay polite to all the people who would want to ask questions about my child's condition, when their only reason for asking is just "I saw a kid walking funny and had to know why."

[mmswm]

One of my friends has a son with a very rare and very severe (= almost always lethal before adulthood) medical problem.  Her son is otherwise a typical five-year-old boy, but he already has some physical issues which make it obvious, particularly when he's tired, that he's got something wrong with how his body moves.  She gets questions about it all. the. time. from people who have no business asking - and since his condition is so rare, there's no way to just say "Oh, he's got X."  So if she does explain, she has to go into the whole spiel about what X is, and people have questions, and they find out that her son is probably not going to live past his teen years, and they have more questions about that (both about the disease and about her parenting choices).  My hat goes off to her - she's doing a fantastic job being a mom, and I can't imagine taking on the challenges she has.  I also can't imagine how I'd stay polite to all the people who would want to ask questions about my child's condition, when their only reason for asking is just "I saw a kid walking funny and had to know why."

Give your friend a hug from me.  One thing I've always been thankful for, is that while MHE causes deformities and is almost always at least mildly disabling (though usually closer to moderate/severe), it is not  life-threatening.  I would guess there's a whole different layer of emotion that I can't even begin to understand. I do understand the parts about the rare condition.  I've even had to explain what the condition is to doctors and nurses (though usually orthopedists know what it is, but not always).

The sequence you describe is part of why I'm searching for a polite way to shut the conversations down.  I don't want to teach my kids to be embarrassed or ashamed of their medical condition, but there's a fine line between reasonable and invasive questions.  I'm working on finding that balance between answering honest questions without getting too personal.

[Drawberry]

I have a healthy respect for parents, and especially those who are handling sick children. You are clearly devoted to your children and love them dearly, I hope you all have many happy days ahead.

While I understand not wanting your children to feel ashamed of their illness neglecting to inform strangers is not equal to teaching guilt or shame. These people have no business in your lives and it is not your job to educate every curious bore who wanders into a 5 mile radius.  Others have offered lovely responses to unwelcome questioning but I want to add that there is nothing rude about being firm in your responses at cutting the conversation off. I think we're all raised with this idea that we owe people our voices, we owe them answers to everything and fear more for being perceived as cold or rude then we do for keeping our privacy. Firmness is not rudeness.

[Danika]

...I think we're all raised with this idea that we owe people our voices, we owe them answers to everything and fear more for being perceived as cold or rude then we do for keeping our privacy. Firmness is not rudeness.

That is very good insight that I, personally, need to remember.

[joraemi]

Evil Jo would hope that the family member with the most horribly behaved children in the family would ask this so you could say, "Well, you know if only *my* children had been as perfect as *yours* are the world would be a better place."

But in reality, maybe it could go like this:

Rude person:  I don't understand why you had kids when you knew they could be sick!
You: I don't understand why people don't think before they speak.

Walk away.