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When People Make Jokes About My Invisible Illness

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I’ve felt different all my life. Some cases were very small; I liked bananas while my friends were repulsed by them. Other times, they were large, sticking in my memory like cement. For example, one of my only friends in the seventh grade was my math teacher, Mr. Kovak, who I would walk the track with every day at recess because I had no one else to hang out with. The month I turned green was one of those “big ones,” that I know I will remember until the day I die.

I had just been rushed to the emergency room when my neurologist noticed a spike in my liver enzyme levels. (Yes, by my senior year of high school I had a regular physician, as well as a gastroenterologist, and a neurologist. I would soon add “endocrinologist” and “hepatologist” to that list.) I felt completely fine, but in the days that followed, my blood levels continued to rise as my skin started to change. I felt trapped in my own body, like I was fooling everyone from the outside. I felt fine, like I could go run a marathon if I wanted to, but the outside was deceptive. I looked as if I was going to vomit at any moment. My skin was an ugly shade of chartreuse, and the whites of my eyes grew unrecognizably yellow. I hated looking in a mirror; it scared me. I didn’t want my mind tricking me into thinking I really did feel bad simply based on what I could see of myself.

When I was discharged six days later, my doctors having mapped out a plan of how to get control of my rampant liver, people were shocked when they saw me. I noticed, too. People leaned away from me as they asked, “How are you feeling?” The third night after I had been discharged, my mom and I had plans to make dinner together, just the two of us. The food was almost ready when we realized: We forgot the bread! What good is pasta without more carbs covered in butter and garlic to go along with it? Luckily, the grocery store was less than a mile away, so I jumped in the car to grab some bread as mom put the finishing touches on the pasta. I raced through the store, grabbed the bread, and hurried to the only open cashier in the nearly empty store.

The dark-haired girl murmured the standard, “Find everything OK?” as she took the bread from my hands and scanned it quickly. I don’t even think she recognized my, “Yep. Thanks,” as she hit a few buttons on the cash register before asking, “Credit or debit?”

When she looked up at me, I saw her face visibly change. Suddenly she was fully attentive to my presence, her jaw suddenly fallen open in disbelief, which I only thought that happened in books and poorly produced sitcoms. As I slid my card through the machine, I felt her eyes boring into me. When I looked up and made eye contact again, her brow was now furrowed, mouth still agape. I was now sure that my face was not only a yellowish green, but was now adding some pink as my cheeks began to burn with embarrassment. I snatched the bread and receipt from her, and she continued to stare as I made my way through the door to the parking lot, blinking back hot tears that were dangerously close to spilling over and running down my jaundice cheeks.

I collected myself in the car as I drove the two minutes back home. When I stepped through my garage door, I told my mom what had happened with humor in my voice, joking, “Didn’t her parents teach her not to stare?” There were instances like that night that would soon follow, like my “friend” in my AP government class who switched seats so he wouldn’t have to sit near me and “catch” what I had. I would go home and try to joke away the pain with my parents. But I never let go of those moments.

I was reminded of such moments tonight.

Aside from the couple months when my skin was a different color, I’ve suffered an invisible sickness for as long as I can remember. My stomach and intestines have always given me grief. I’ve suffered through chronic nausea that would leave me asleep on the bathroom floor at two in the morning for countless nights in a row, to endless, painful constipation, cramping, and stomach pain, to mind-boggling, tunnel vision-inducing migraines.

People tend to care less when they can’t see what’s affecting you. When your skin is green, the jaw drop happens more frequently, and people are more willing to bring you gift baskets (shout-out to my senior year drama teacher on that one). But when you are going through a tough bout of constipation that requires you to spend what feels like an endless amount of time in the bathroom, people tend to be less concerned. No one cares how incredibly embarrassing and humiliating it is, especially when your boss calls you out on it, as if it’s something you can control.

People also tend to joke around more with things they can’t see. One of the managers I work with at an upscale Los Angeles restaurant had surgery on her foot a little while ago, that still gives her pretty severe pain. She walks with a limp. People don’t question it when she needs to excuse herself to the office, or requests a stool to be brought to her while she works.

A week and a half ago my abdomen woke me up, screaming in pain. I was vomiting all night. At urgent care the next day, the doctor didn’t know what was wrong. In the coming week I was sent to have an abdominal ultrasound, followed quickly by a CT when the ultrasound didn’t reveal anything unusual. My scans came out clean, but I was still in tremendous pain. I was given pain meds, but the kind that you can’t take during the day because they make you drowsy. So, I was in severe pain, and had to go to work on medication because I needed the money, and the restaurant needed me.

Luckily, my manager with the foot problem understood what it is like to have to work despite your pain, so she brought me a stool to sit on and ordered the servers to help me reset tables. It made a huge difference. Standing only made my pain worse, as if it was stretching the pain throughout the entire right side of my abdomen, instead of keeping it localized to one particular spot. Some servers joked with me, giving me quick back rubs when a manager had their back turned, or asking me if my pancreas was still “aflutter.” Those comments always made me smile; beneath the humor I could tell they cared about my well-being.

There was one joke, though, that left a bad taste in my mouth. It started with someone asking why I was on the stool, as the hostesses of the restaurant typically stand. I explained the short and sweet version that I had some pretty painful abdominal pain, so the manager let me stay seated through my shift.

“That’s a good excuse, I should use that sometime,” was his response, quickly followed by, “Just kidding.”

The words stung, and I winced as he walked away, trying not to let what he said bother me as much as it did. It was a joke, after all, I said to myself as I tried to distract myself with organizing the server cards I had lined up to seat whoever came through the restaurant next.

But it hurt. It still hurts, even though I’m sure he said it flippantly, not meaning anything personal. But, it’s not the first time I’ve gotten a comment like that for something health-related. It’s off-hand responses that come after I’ve been in the bathroom for a long time and someone notices, or when a teacher rolls their eyes because I think I’m going to throw up and have to run to the nurse’s office for the fourth day in a row. I have let words like these beat me down for so much of my life that, at times, I start to wonder whether or not I am not being tough enough, or I’m not in good enough control of my body. That type of psychological welfare can really take a toll on a person.

I wanted to write this to draw attention to the problem. I’m sorry if you’re uncomfortable with my ailments, and maybe disclosing my constipation was too much information for such a public forum (honestly, it’s just poop -we all do it). But please take into consideration the words that you consider saying to someone else about their health that might be seriously affecting them. I know, most of the time, you mean it as a joke. But please, spare me jokes like “that’s a good excuse,” because you’re just making me feel worse. I’m already infinitely more embarrassed than I let on, so please don’t draw attention to it.

Honestly, I’m just so exhausted for apologizing for things I can’t control. The pain I keep silent is so much more than what lies in my abdomen. Please remember that words that you consider funny are sometimes more hurtful than you could ever imagine, especially if you’ve never experienced what it’s like to have a chronic health problem.

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Thinkstock Image By: barsik

Originally published: May 16, 2017
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