The strangeness of “I could never do that”

April 13, 2016

Me: I don’t eat gluten.
Them: I could never give up gluten.IMG_20160413_173002

Me: I can’t jog or do any exercise.
Them: I could never stop exercising.

I hear this response over and over. The “I could never….” response. And over and over I have the same response: you really don’t get it.

Let’s take gluten as an example. When I say I can’t eat gluten, even though the other person knows it’s for health reasons, they’ll say, “I could never give that up.” What do they mean? It’s not as if I gave up gluten on a whim. No one offered me a cure for Celiac and I said, “Thanks, but no thanks.” I wasn’t asked, would you like to give up gluten just for the hell of it?” No, this is necessary for me to live.

So when someone says, “I could never give them up,” what I hear is, “I would rather die.” Because that’s the other option. Give up gluten or die. No, death wouldn’t come immediately, but it would come eventually. And in the meantime there would be a lot of horrible nausea, pain, and other symptoms.

When someone says, “I could never do that” they probably mean that they’re impressed that I can do it. As if I have a choice. They probably mean it in a nice way. But it doesn’t feel that way. Because the other thing I hear is, “I love this thing so much, I can’t imagine living without it, but you can’t have it.” Again, I know they don’t mean it that way, but that’s how I hear it. They get it and I don’t.

Exercise is the same thing. When someone says, “I could never give up skiing/jogging/dancing/kickboxing/some-other-form-of-physical-exertion” what I hear is, “I would rather die” or “I love this thing so much that my life wouldn’t be complete without it, so your life must really be lacking.” I’m sure they don’t mean to convey that message, even though I do get the feeling they’re privately thinking it. Because what else could they mean? When I say, I can’t do that, and I really can’t, even though I want to, but my body won’t let me, then they know I have no choice. Responding that they could never give it up just shows me how important it is to them.

What if I was in a wheelchair? Some days I have been. More days I will be. So far, no one has said, “I can’t imagine not being able to walk.” But I’m pretty sure they will. Because to them, life can’t be complete without the ability to walk. Yet I’m also pretty sure that if I told them they had to choose between using a wheelchair and death, they’d choose the wheelchair.

I keep offering death as the alternative because as far as I can tell, there is no other. It’s not like I can find some other alternative through “trying harder” or some miracle cure that I’ve simply chosen to not take. This is my reality.

Every time we’d talk about my grandmother’s advancing age, she’d always say, “It sure beats the alternative!” Then she’d blow out the candles on her birthday cake. She said that every year until she passed away at the age of 94.

So from now on, when someone says, “I could never….” to something that I have no choice about, I’m going to say, “It sure beats the alternative!” and then give them a moment to figure out what I mean. I think that might shut them up.

Because even if they don’t mean it to, it hurts.

What has your experience been with “I could never….”? Do people say it to you? How does it make you feel? How do you respond? Please comment below.

Physical vs. cognitive: it’s all connected, sometimes

April 10, 2016

I was chatting with a few people about my chronic illness writing when one mentioned a friend with fibromyalgia who also has some cognitive issues. She asked if chronic pain and cognitive problems could be related.

Oh boy, here we go!

Someone else there with chronic pain said that it makes sense to have cognitive issues because the pain can be tiring, but she was a bit vague. I wanted to go deeper.

First, I pointed out that pain can be distracting. I asked, “If I stabbed you with a knife, how well do you think you’d complete a crossword puzzle.” I saw the wheels turning as the others processed that, imagined it. It was graphic, and it got my point across well.

Then, we mentioned how tiring it is to always be in pain. And on top of that kind of tiredness, it’s hard to sleep when you’re in pain, so there’s sleep deprivation, too. I asked how their cognitive abilities are after a few nights of bad sleep. “Now imagine that every night for decades.” Again, they slowly realized.

Finally, I explained how sometimes that thing that causes the pain and also cause cognitive impairs all on its own. In other words, the pain doesn’t cause cognitive problems, the cause of the pain causes those problems. For example, I have Hashimoto’s Disease. Hashimoto’s can have a lot of symptoms including joint pain, digestive issues, cognitive problems, low body temperature, weight gain, hair loss, and more. Notice that one of those symptoms is joint pain. Notice that another of those symptoms is cognitive impairment. Neither causes the other; they’re both caused by Hashimoto’s. Everyone nodded along.

I love that this acquaintance asked these questions and that everyone in the room made the effort to thoughtfully consider what I said. I love that they really tried to understand! Sometimes I hate talking about chronic illness because I just want to forget about it and go have a good time. But sometimes it’s so wonderful to educate people, to help them understand. And now the person who asked will have a slightly better understanding of her friend’s symptoms.

I admit, there are days when I dodge these questions, but today was a good day, so I answered, and I feel great about it. What about you? Do you ever answer these kinds of questions? Do you avoid them? Are you never asked? How do you feel about educating people? Please comment with your thoughts!

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