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The Unseen Disease

Coping with Crohn's Disease

By Beth CarlbergPublished 3 years ago 5 min read
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The Unseen Disease
Photo by Kat J on Unsplash

Diarrhea doesn’t exactly create a feeling of closeness; colonoscopies aren’t exactly conducive to intimate moments. Whether by the choice of others or your own, disease only makes you more isolated. Especially when that disease isn’t readily seen by others, when the vast majority of it takes place in the bathroom.

If I had a disease that marked me, say leprosy, or something that had external symptoms, say Parkinson’s, at least others would see what was going on. But the deepest effect of this disease is to pretend normalcy, while I die inwardly.

The only thing that solidified my feelings were the writings of others; Donald Hall, Mary Oliver, Joan Didion. It wasn’t that these writings solved my problem. They pinpointed them so I could actually feel them. All the little feelings I couldn’t quite grasp long enough to see what they were; they were like worms coming out in places I least expected.

I looked fine. And I pretended enough, I could feel fine. I must be. After all, I wasn’t sitting alone in a musty room, my hair sticking to my face, refusing to see anyone. No, it came out in eating (lack thereof), restless nights (I was often unable to get to sleep till 3 or 4). When I was asked how I was doing, I didn’t think too hard because the veneer wasn’t thick.

After all, I wasn’t really sick. I wasn’t underweight, wasn’t being hospitalized, hadn’t undergone surgery (at least, not with stitches). I had to be fine. It was required. A deployed husband, a one-year-old child, these people made being sick impossible.

But the longer you pretend the more of the lie disintegrates.

I don’t like telling people about it and I usually accept my symptoms as normal. I mean doesn’t everyone have diarrhea? I carefully leave out the fact that mine is often three times a day. See how a simple neglect of fact can make normalcy possible?

How much energy I have dictates the whole course of my life at times. Some days, I feel trapped on a tiny island of weariness, watching the world, and all I want to do, flow past me. I feel trapped in this limbo of half-sick, half-alive. I’m not dying, I’m not horribly sick, but neither am I fully living. I’ve learned to prioritize what I do; some days, I have to choose between working and playing with my son, going to the grocery store or going to the zoo. My son gets less time with me some days because my energy has to be used for something else. And then by the end of the day, I’m often so tired there’s nothing left my husband, let alone myself. And, yes, I know many mothers, many women, feel this way. But when getting dressed in the morning takes thirty minutes because you have to keep sitting down to rest, you know something isn’t right. Do you see how much of this is easy to hide? If people don’t know I’m sick, they don’t expect me to be miserably tired. So if I never admit to anyone how I feel, I can just keep acting.

It’s ironic and scary all the things people don’t see or that you can make them see instead of the truth. When you don’t look sick, it’s much easier. But given a thin arm, shaved head, open wound, missing limbs, everyone is suddenly concerned.

To cease pretending is to acknowledge the disease. To acknowledge the disease is to let all the worms out – medication, hospitals, side-effects, cancer, and the possibility that nothing will work and I will always feel this way. To acknowledge the disease is to let it take over my life – how I eat, where I go, whom I’m with, for how long I’m out, how much energy I have. Now, the disease is actually dictating those things anyway, but I can ignore it as long as the disease doesn’t exist. To let it take over is to cease to be myself. It is to see only “it” staring back at me. It is to see the worried looks, hear the distressed concern. To see all this is to face mortality.

But I’m not sick so none of these things worry me.

There is this persistent thought in my head that in admitting my illness, I will succumb to it. I will no longer be “normal.” People will see me differently, treat me differently, fret about me. If people think I’m OK, then I don’t have to be reminded of my illness by their anxiety. So this is where I always get stuck – I want them to see because I’m tired of pretending but I secretly want to keep up the charade so I can continue to ignore reality.

The longer people know, the different things they expect. At first, they are highly uneasy around me, always wanting to help me eat, or offering vitamins that will “cure” the illness, or offering medical advice, constantly asking me how I feel. Whether this attention is genuine care or not, doesn’t matter. It’s a reminder that something is wrong, and it’s something no one can fix or solve or take away. It’s a reminder that I have to live with this for the rest of my life. After a while, when I seem less sick, people stop asking how I am, start assuming I feel fine because I look better. A few, those few who have a disease or have been through a deep illness, will continue to ask. As even more time passes, no one seems to even remember that I have a disease, including me. Then, whether it be a few months or a year, I have a flare and it all comes back. But this time, there’s not quite so much attention because the flare doesn’t make me lose weight or throw up three times a week, it just makes me highly sensitive to food, moody, tired, and most food cause, at the best, loose stools and gas.

In some ways, I’m glad there aren’t so many people worrying over me; it makes it easier to act like everything is fine. But this is where I start to wonder if people want me to pretend. Do they expect me to learn to be normal? After all, I’m going to have this disease for my entire life. I need to learn to cope with it and coping must mean acting like nothing is wrong.

coping
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About the Creator

Beth Carlberg

Beth Carlberg is a freelance writer, currently working on her first novel. She primarily writes fantasy and folk horror. You can view more of her work at https://www.wingsandwriting.com. You can also email her at [email protected]

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