Friday, December 23, 2011

How to talk to someone who is chronically ill...

I complain about my health. That makes other people uncomfortable, I know. We're not supposed to talk about our health in this culture. For one, that's something personal. So personal that we even protect it by law with doctor-patient confidentiality. For two, we don't praise weakness in this culture, and admitting health problems is doing exactly that. Or so it seems. But for someone who is chronically ill, it's a little different.

See, if I were you I'd be complaining about my job, or traffic, or stupid people I have to deal with on a regular basis. We are a complaining species. But I don't have a job or a commute and the number of people I deal with on a weekly basis is small. I deal with my health. That's pretty much all I deal with. That and doctors. I'm complaining about what I know.

I'm not looking for sympathy at all. I'm looking for commiseration. I'm looking for a conversation something like this. Let's assume this is my version of "texts from last night".
Me: OMFG... So, last night I was dreaming that I was nauseated. Then I realized that the nausea wasn't part of the dream and woke up so fast... I made it to the bathroom, but GD... My sleep schedule is effing shot now and I feel like hell. FML

You: Yeah, well, you'll have that on a job this size. Do you have anything on your schedule that you have to be at? Is messing up your sleep schedule gonna screw things? Bravo on making it to the bathroom! Clean up is always easier that way. lol
That type of text message would be perfect. It's first says, "That sucks!" in a funny, uplifting way. Next, it addresses the problem, but in a way that focuses on outcomes, rather than the problem itself. I don't know about other people with chronic illnesses, but I don't actually want to dwell on my symptoms. When I verbalize them, I assume you realize what the consequences of having to go through that would be. But I forget, most people stop their whole life with an illness, because they assume it will be over. It's freak-out time when symptoms come up. But no so with me. It's "time to make the donuts," so to speak. So the way the example text ends is a way to acknowledge my achievement, also without dwelling on any of the symptoms.

Sometimes, I'll admit, I seem inconsolable. I'm a sobbing mess. My world is falling apart around my ears (or so I believe), and, "Things are never gonna get better!!!" (Yes, that's an actual quote.) Here's a sample response for those situations.
Me: But thing's aren't going to get better. This disease is degenerative! There's nothing they can do!

You: Alright. You're doomed. But you know what? You're still amazing. You still shine. I still want to be around you. This doesn't diminish who you are. It may make it harder to be who you are and express that... but we're all grateful for what we can get. Any little bit of you is better than nothing, which is what we had before. Hang in there. It may be a downhill slide, but you are still a beautiful soul. So what if it's impossible? Make it look awesome...

Me: But I'm broken! They can't fix this and all I'm doing is getting sicker! I'm a money pit and a a burden to everyone around me!

You: Hold up, there. There were no promises when we were born that we'd be healthy. There were no promises we'd be financially secure. That's life. We're all stumbling through it as best we can. It's okay that your best isn't good enough sometimes. Or even a lot of times. That's okay. Life isn't a race to be won... it's a marathon to be endured. We want to help pick you up. We want to keep you with us. We're happy to pick you up. If we had to stand in line to buy tickets, we would. So don't worry about what it's costs us... You're important enough. We do these things gladly.

When we stumble, help us laugh at it. When things are rough and we complain, admire our spirit and our hard work. When things are impossible, dare us to dream. When we despair about what we have lost, remind us it's not about winning.

Don't be afraid to talk to us, please. We do feel very alone in what we're going through. But we know you're looking at it from the outside. We know you can't share our perspective on this. We're not asking you for that. We're asking you to see us despite that. We're asking you if you can look through or illness and still see the person inside there. We want to know you haven't give up on us even though we feel miserable. We want to know that just because we feel miserable, it doesn't mean we are miserable.

Yes, it is difficult to know what to say. Without a doubt. But I hope I've given you some ideas here. I hope this helps your conversations with folks like us.

Good luck.


  1. Great post. Mind if I share it with some people? Some of the people in my life don't know how to talk to sick people...

  2. I'd *love for you to share this! As I say on my Reposting page: "Anyone may repost my work, as long as you credit me. Proper credit includes a prominent, easily visible link to the source of the material you want to use, but I ask you refrain from doing complete re-posts of my work without getting my permission first. If you want to use a whole blog post for something, best to ask me first."

    If you'd like to print this page out to hand to others, feel free.