The right words are often hard to come by. I’ve heard that a lot since my teenager got sick. I’ve heard a lot of “I’m sorry.” My answer? I’m not. If I spent time feeling sorry for us it would take over our lives. I’ve also heard, “that sucks that she’s sick.” I agree with that wholeheartedly. I’ve also heard, “I don’t know how you do it.” Frankly, I don’t either. You just do. And, I’ve also heard a lot of “I just don’t know the right words to say…” Guess what? There aren’t any right words. There isn’t anything specific that I need anyone to say and honestly, at times I’d just like to have a conversation that has absolutely nothing to do with doctors or hospitals or even my daughter.
Chronic illness is hard for people to understand. Most people are blessed with good health and have never had the experiences we’ve had. It’s also pretty scary for them. When Rosie first got sick, I I used to joke that it wasn’t contagious because people suddenly started acting a little strange around us. Over the course of two years, I’ve grown comfortable discussing our lives with others because I think it’s important that they know about invisible illnesses. Some people look shocked when I say I have a chronically ill teen. Others are compassionate. Many are silent. The silence hurts the worst.
As any parent of a chronically ill child will tell you, people tend to disappear from your life when you’re dealing with illness on a daily basis. Once your routine changes and you’re not doing all the things you did before, you discover who in your life is really a person of substance. They’re the ones that make the effort to check in, ask what you need and drop little gifts on the porch when you say you need nothing. When I lost a few friends when Rosie got sick, it stung at first but I realize that they aren’t the kinds of people I want in my life. I want the people that even though they don’t understand what we’re going through still want to have a glass of wine and just talk.
I said that to a friend last week. You don’t have to have the right words. We can just hang out like we used to and talk about nothing. Get our girls together and just laugh. Just be who we used to be.
Am I a different person than I was when this all started? Absolutely but it’s not how most think. I’m not sad or angry or jaded. I don’t think the world is a bad place (although I do think there are bad doctors). I do think there are some really ignorant people out there (not stupid. That’s a different thing). There are a lot of things in life that I used to care about but just don’t anymore because they don’t really matter. I’m stronger than I ever thought I was. I’m also more patient. I do see the world through different eyes and that’s okay because it’s my mission in life to make sure that I share some of that with others so they can start seeing illness through a different perspective.
So, what are the right words? I don’t know. Everyone is different. What may be important for one chronically ill person or caregiver to hear may not be to another. I can only speak for us. While we both talk often about illness, we often don’t want to talk about it. We want to talk about all the day-to-day things that everyone else does. We just want to hear from people and have normal, boring conversations. Those are the right words.