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.
Great post! You've hit it right on the nail. Athough flattering at the time, someone saying "I don't know how you got through that" might sound encouraging, but then I think to myself, well what else am I going to do? And I really hate this one: "things happen for a reason", ah is that so... That' burns me.
ReplyDeleteI'll be reading your previous post. It's always nice to have someone understand and relate. I hope your doing well.
Patrick (@SCDPat)
Thanks for the comment! You're totally right. "Everything happens for a reason" is terrible. I didn't even think about that one... Ugh. It's always so well intentioned, is the thing. But it's so hard to be on the receiving end of those comments.
DeleteI wonder about your opinion of a mom's pep talk that was meant to remind her daughter, afflicted with Crohn's, that lots of people live with conditions that disable them everyday. That she was raised surrounded by persons living with disabilities. Her father's Ankylosing Spodilitis has forced him to live quietly with pain everyday of his adult life. What would he say to someone who tried to tell him "it will get better" or "it has made him stronger"? I suspect he would say BULLSHIT! It is just pain that he has had to learn to manage and work his way around to get through each day for the last 45 years. It's true, the pain had no magical powers to make him the king of grace or stronger than the average man.
ReplyDeleteThe real point and the thing this mom wants her daughter to take away from his experince is this: Has her father's disease kept him from doing things he wanted to do or made his life turn out differently than his aspirations as a young man would have directed? Unequivocally, yes. When your focus becomes about whether or not you can fight through and get out of bed in the morning, the tasks you wanted to complete when you are up and moving lose importance.
This mom's hope for her daughter is that she find a way to keep her dreams and aspirations alive despite the pain and discomfort. That while the disability will always be a part of who she is, it should never become ALL that she is.
Love, The Mom.