Strange question.

I've been thinking about this on and off for a few days now. I was having dinner with my friends the other night and one mentioned that his sibling was diagnosed with something, but his parents won't tell him. Another friend's first instinct was to verbalize how unfair and unethical that was.

And maybe 2 years ago, I would've been with him. But I had to disagree this time.

It's no secret that I have PKD. I've finally gotten to the point where I'm not thinking about it all the time, but I've been permanently affected by it, I will always be affected by it, and I know it will get worse. It's not just a physical systemic disease, it's very mental. It's impossible to explain what it's like to know your body is being attacked by itself. Your body is killing you. You're trapped in that body. It's an indescribable horror. And it affects my outlook on life, my attitude about life, and my decisions.

Not even consiously. I keep planning my life around the fact that most people start experiencing real problems at age 30. Many retire at that age. My life expectancy is 53 years old. I keep...planning, I guess, to die then. I don't plan to ever see grandchildren, if we even have kids, and I don't plan to work for long.

Anyway, it's really affected my life in a way that I sometimes wish I never knew. I mean, I love knowing that my problems weren't all in my head. I'm happy I can plan, but the problem is that I don't know what to expect. I can't possibly prepare, all I can do is worry. Everyone is so different.

So I guess, if one of our kids had it, they'd at least have me to go off of, but that's the thing. I don't want them to know. I don't want them to worry about me or about themselves. I want them to have the oblivious childhood I had. But then, at some point, don't they have the right to know? At least for their own health? And how long can I keep my health a secret? I mean..."too numerous to count" cysts at my age isn't great.

It's weird...I never thought I'd have this question, but do you tell your kids they could have this life-threatening, systemic, progressive illness? Do you tell them you have it?

I really can't blame my friend's parents for their decision. Maybe it would help, but what if it doesn't? It's a strange question.