It Happened to Me: You Think You Envy My Chronic Disease

When my PCP first sent me to the hospital for abdominal X-rays four years ago, the radiologist wanted to know what kinds of symptoms I’d been experiencing. “I don’t have an appetite,” I told her. “I wish I had that problem,” she responded.

Jul 23, 2012 at 11:00am | Leave a comment

When someone tells me they’re envious of how slim I am, I have two ways of responding. I can reach deep down for what I hope is a demure smile and thank them, or I can tell them that, actually, I have a devastating chronic disease that has completely ruined food for me, or something to that extent.

I have to reach deeper and deeper for that smile these days, because normally the other option is just TMI. Although, I have to admit I kind of secretly enjoy it when they fall all over themselves with apologies.

When my PCP first sent me to the hospital for abdominal X-rays four years ago, the radiologist wanted to know what kinds of symptoms I’d been experiencing.

“I don’t have an appetite,” I told her.

“I wish I had that problem,” she responded.

I laughed. I could laugh, because it had not yet occurred to me that whatever was wrong with my body might never go away. I could laugh, because that was only the first time I would hear some variation of this response in the years to come. 

Invisible chronic diseases are hard for other people to come to terms with. Most people, when they look at me, don’t see anything wrong. They see a thin, thirty-something woman with glasses and tattoos.

Most people don’t know that I am severely underweight, and borderline malnourished. Most people don’t know that I have anxiety about eating, that there are many mornings when I can’t bear to face the day, that worry obsessively about my health, or that I am terrified of becoming a burden to my loved ones.

When someone that works on my floor walks into the restroom, they won’t know that I am shut away in the handicapped stall playing Bubble Shooter on my cell and trying not to vomit. They won’t know that I am not afraid of dying, I am afraid of having to live like this for the rest of my life. 

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I have idiopathic gastroparesis. It’s the worst. You’ve probably never heard of it. When I was worriedly perusing medical reference books, trying to figure out the origin of my symptoms, gastroparesis was not one of the conditions I read about.

I never heard the term until after I failed the one diagnostic test that confirmed my doctor’s suspicions. I was so relieved to finally have a name for what was happening to me, until I realized what it meant. It meant my life was changed. Sometimes it felt like my life was over.

There would be days to come when the only thing I looked forward to was going to bed, because for a few hours I could be blissfully unconscious.

Gastroparesis is a functional digestive motility disorder. The idiopathic part refers to there being no known origin for the disease. It just happened to me, and four years later, I still don’t know why. I become full after just a few bites of food, because the peristaltic movements that normally push food out of my stomach are not happening at the rate that they should. Fullness, stomach bloating and distension, are part of my daily existence. So is nausea. 

Let me tell you about the nausea. People try to compare it to having the flu 24 hours a day, 7 days a week. That’s not quite it. For me, the nausea is not present every hour at the same intensity. It flows and ebbs like the tides. Sometimes it comes on like a tsunami, and sometimes it creeps up on you when you’re not expecting it. Sometimes it is just enough to keep you feeling like shit.

Nausea is not just physical. It has emotional consequences, too. After spending hours gripped by a severe bout of nausea, I am both physically and emotionally exhausted. During the worst episodes, I can’t speak, I can’t think, I can’t move. My whole body quakes. If I am home, I lock myself in the bathroom and take off my clothes. I kneel in front of the toilet and stare up at the ceiling, digging my fingernails into the palms of my hands. I don’t want to vomit. I don’t want to lose the calories I fought so hard to consume.

I can usually tell the nausea has started to subside when I am able to cry. Somehow, crying further reduces the nausea for reasons I can’t explain. Eventually, I emerge from the bathroom. Sometimes an hour has passed. Sometimes three hours have passed.

My eyes feel puffy from crying, the skin on my cheeks feel tight from the dried streaks of tears. This is my life. Sometimes it is only a sliver of my life. Sometimes it feels like nausea consumes my life. Either way, nausea is part of every day. The sun rises, the sun sets; I am nauseous.

Some people have fat pants for when their weight fluctuates. I have skinny pants. I keep a few pairs of tiny pants for flare-ups when I suddenly drop five pounds. Let me tell you, I am svelte. Dressed, I am straight up and down, flat assed, with breasts that fit easily in my cupped hands.

However, when you drop weight too quickly, and also happen to be in your late twenties, your skin is not so elastic anymore. I don’t look so good naked. Maybe with certain parts of my body artistically draped with a sheet. At my sickest, when my weight dipped below 90 pounds, I looked deflated.

Once, just as I was stepping into the shower, I happen to glance at myself in the full-length mirror. That was probably the first time I was really frightened. I could have slit your throat with the sharp edge of my hip bone. 

I am trapped in my body. Gastroparesis is not a bad relationship I can end. I can’t break up with it. I can’t terminate the lease with my body and rent a new one. This is it. It broke and can’t be fixed. Somehow I must come to terms with this. Somehow I must accept these living conditions.

I don’t want to die. I want to live. I’m doing all right, I guess. I am trying. I am doing the best that I can. I have wonderfully supportive friends and family, coworkers and physicians.  

I don’t want to get into the physiology of gastroparesis. You can Google it. I don’t want to catalog all of my symptoms and daily struggles. It’s been long enough that I don’t really remember what it was like to not have gastroparesis. I have forgotten what most of the foods I used to eat tasted like.

My point is that you can never really know what’s going on in someone else’s life. What you see on the outside isn’t much to go on. The things that you can’t see are legion.

I wish I could wear my gastroparesis on the outside so everyone would understand. So no one would say, “So you like…just feel full when you eat?” or, “I wish I was as skinny as you.”

Everyone struggles with something. Just because someone else may seem to have it worse doesn’t invalidate your personal struggles, no matter how insignificant they appear to be; it’s all relative.

I like to think that nothing, good or bad, is permanent. That is what helps me keep things in perspective. Tomorrow is another day. Maybe it will be worse, and maybe it will be better. But you’ll never know unless you get there.