The scene: You're sitting on a comfy couch having a conversation with a good friend or a family member. Someone you're very close to. Maybe you're having a cup of coffee/tea or a glass of wine. It's been a good night of sharing with someone you trust. The issue you're talking about doesn't necessarily have to be Crohn's, but let's say it is. You're feeling comfortable, so you are very honest about your experience. You decide it's okay, just for a moment, to let go of that tone of optimism you normally adopt when speaking about your disease. It's not that you've actually given up hope, you're just tired. After you finish your tale, your friend/family member looks at you lovingly and says something like, "you're the strongest person I know" or, my personal favorite, "it'll just make you stronger in the end."
I've been trying to write this post for a while now, and I've been having a lot of trouble with it. I've been pretty frustrated by trying to get out what I want to say as well as the topic itself. Here's the thing. I don't want this to be accusatory in any way. I understand these reactions. I've had these reactions. But something needs to be said about the near uselessness of the pep talk in relation to chronic illness.
The thing is, these talks often fall into one of a couple categories. Let's call the first the Pedestal Response. Phrases often found in this conversation consist of, "you're the strongest person I know", "your story is just so inspiring", "I wish I were as brave as you" and "I don't think I'd handle your situation with as much grace as you manage." Now, these words are trying to say, "dang, that's some rough stuff you're going through, but you seem to handle it pretty well for the most part." I get that. And I appreciate it. Really, Crohn's is rough sometimes and I work hard to handle it well. I don't always, though, and that is the problem with this pep talk. In feminist theory, there's this idea of benevolent sexism. You know when someone says, "women are always right"? Well, we all know that's not true. Women are wrong sometimes, just like men. Because we're human. Benevolent sexism places women on a pedestal. It's another tool society uses to perpetuate the idea that women should behave in accordance with traditional gender roles and it's not cool.
That's what this pep talk feels like to me. Like whoever I'm talking to has a completely skewed idea of what my life is. It might be just my heightened sense of guilt, but those comments make me feel incredibly false. I always feel I must have painted an intensely glorified picture of myself in order for someone to think those things. The truth is, having a chronic disease doesn't make me inherently stronger than anyone else. My story is just my story. It's not there to inspire anyone. Sometimes I'm brave, especially when I'm around other people. Sometimes I spend a full day in bed because Myrtle isn't happy and I just want to feel bad for myself for a while. I don't ever feel particularly graceful. And I'm a dancer.
So, that's number one. I'm going to call the second type of pep talk the Light-at-the-End-of-the-Tunnel Response. You'll often hear things like "it'll just make you stronger in the end" and "tomorrow's a new day" in this conversation. I'm absolutely sure there are other examples of this, but honestly none of them frustrate me as much as "it'll just make you stronger in the end." (And, yes. I do realize that makes three times I've said that phrase in one blog post.) In fact, I find it so frustrating that I've already written an entire post about how frustrating it is. It's just really frustrating, okay?!
Whew... alright. So, since I've already written about this, I'll just give you the cliffs notes version of my issues with this pep talk. When a person is talking about their disease, they're talking about what is happening now, or what has already happened. Usually, we understand that things change and that, if we're having a hard time, it won't last forever. But the truth is that, sometimes it feels like that. It gets hard to believe that you could be even remotely well ever again at times. This is a perfectly legitimate reaction. I mean, I'm not advocating that people with Crohn's should be left alone to wallow all day, every day. I'm just saying that everyone needs to break down a little every once in a while. We can't just deny that those feelings are a part of the experience of living with Crohn's.
Also, using the word "end" in relation to a chronic illness is rarely helpful.
More than anything else, the problem with pep talks, no matter which category they fall under, is that they miss the point of sharing about chronic disease. The point is not to make the person doing the talking feel better about their disease. It is not to praise the speaker. It is not to give them some kind of hope. The point is sharing.