I agree that it is so much more frustrating when it comes from your family or friends. I, too, love to educate people about CF and hope that I can leave a good enough impression that the next time they see a fund raiser for CF, they think about our conversation. So strangers, well, they just normally don't understand much about CF.
But with those who do know, it can be aggravating. Recently I was telling one of my friends (who has a son with Asthma, and although I know it is a challenging condition itself, it seems she is always comparing it to CF) about our little friend Kaylee who is 10 with CF, and has been given only a few more months to live. Her comment was see how lucky you are. Your kids aren't very sick at all and have such mild CF. To which I agreed to, at first.
But then later on after I hung up the phone, I became frustrated. I don't feel lucky. We have to work hard to keep them healthy. It doesn't just happen. And when they are crying about tummy aches that I can't make go away, or when we are fighting over taking enzymes or whatever...I don't feel lucky. Having to stop what we are doing to do the Vest doesn't make me feel lucky. They are just progressing slower than our little friend Kaylee.
Yes, people can be ignorant to what we go through to keep our kids 'looking' healthy.
