Illness, Silence, Invisibility

I’ve got to find some better ways to deal with the UC symptoms. They vary in intensity, but they’re always there.

And I’m about to have a sobbing meltdown about it.

I just feel like my life is so restricted now. There are days I can’t leave the house because I can’t be sure there will always be a bathroom immediately available. When I’m not having diarrhea, I’m farting. A lot. Loudly. So then I’m too embarrassed to go out, and then I feel stupid because it sounds like such a silly thing to be upset about.

When I do manage to get out, I’m still limited. Going out to eat is a common social thing, but it’s all but impossible now. I was already vegetarian, but now I can’t eat dairy, eggs, gluten, nuts, corn, raw fruits or veggies, cooked veggies with seeds, caffeine, or artificial sweeteners or dyes. When I go to a restaurant, I have to quiz the server in detail about the ingredients of anything. That makes me feel like an asshole and a freak.

I also feel like I talk about it too much. Part of me needs to talk about it because it’s new and scary and life-altering, but another part wants me to stop talking about it and just deal with it on my own. No one wants to hear about your colon, Hope, so would you please just shut up already. Everybody is sick of listening to you whine.

I believe my illness should be so invisible no one even knows I’m sick.

Wow, okay. Starting to notice a theme here: I feel ashamed and guilty for my illness.

I guess it makes sense. When I was a kid, my mother got angry at me for getting sick, like I did it on purpose to inconvenience her. She often accused me of faking. When there was proof that I was sick, she’d tell me I was exaggerating it for attention. Guilt and shame right there, ladies and gentlemen.

But do you think you’re free?

I think I recognize the patterns of my nature.
But do you think you’re free?

–Louise Gluck, from “Mutable Earth”

I think I recognize the patterns of my nature, but I do not think I’m free.

What do I do with that?



Filed under health, psych

2 responses to “Illness, Silence, Invisibility

  1. Oatsie

    You can talk about it here as much as you need to. It isn’t whining.

    I’m sorry I can’t think of something more helpful to say.

  2. I think we all feel ashamed and guilty for things we believe we should be able to control that we can’t. You can’t control your body in the ways you are used to being able to. The particular way it escapes your control is one that forces you to violate all kinds of social norms of behavior: don’t be high-maintenance in a restaurant, don’t make bodily noises in public, don’t lose control of your bladder and bowels. It would be terribly shaming and guilt-inducing for anyone to be in the situation you are in.

    Chronic illness is terribly difficult to learn to cope with, and it is also something I suspect anyone who has never really been ill before really does not and cannot understand. And so you probably aren’t also getting the help making sense of things that we normally get from talking to other people about things. Because they just don’t get it. And they won’t. Not until you get it and can explain it to them.

    My heart goes out to you. Hang in there. You will figure out how to manage this and still have some kind of life.

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