Chris:

When we sat down for dinner and thought about what we were thankful for, something unsettling struck me. My niece was probably thinking about how thankful she was that she didn’t have ADPKD.

I wish her brother had the same good luck.

Lisa:

And it’s not just family. You also have to deal with it at work. On the outside, I look normal, but on the inside I’m anything but. I have chronic pain that makes it hard to stay focused at work. It can even be hard just to sit at my desk for too long.

I was nervous telling my boss. But she was supportive, and she’s been letting me work from home when I need to. But it’s still a concern. What about HR? I worry if I tell them my diagnosis, I might lose my life insurance.

And I haven’t told any of my co-workers yet. What do I say? And do they really need to know, anyway?

Chris:

People just don’t get it. It takes a half-hour of explaining before I can even get to the point. And with every new person I tell, I have to start over again from square one.

There are some good websites with advice, but not enough. Plus, how do I know if what some anonymous person says online is true?

Lisa:

The hardest part for me was going to the doctor. Not my nephrologist, just my normal doctor. I knew more about ADPKD than he did, and I found myself explaining my disease to him.

Chris:

We had to become our own experts. We had to do our own research and keep asking questions. Sitting back wasn’t an option.

Now we’ve made it through all the initial appointments and handoffs, we’ve found a nephrologist we really like. She sometimes rattles off a bunch of medical terminology that sails right over my head, and I make her slow down and re-explain things. I bring a notepad with me every time and take notes.

I sometimes feel like I’m one of my students cramming for a test.

Lisa:

I mean, just talking about it, and telling people what’s going on…it’s half the battle. I worry about my son Tony, too. We’ve signed him up to see a counselor at school. Someone he can talk to.

Because communication is key. You need to talk about this disease. To find people who understand and can support you. It’s hard, but it’s worth it.