Broken Butterfly

Megan Ashcraft

I remember sitting on a white couch. The lights above me were changing colors, a dance the couch joined in with its reflection. I was counting my heart beats as I watched my friends celebrate their acceptance letter to a new college.

One… I thought to myself.

Two…

Three-four. These heart beats were so close, I could barely tell them apart.

Five… No, six? How many was that?

The counting ended as I was pulled up to join in the celebration. But my body was still doing strange things I couldn’t ignore. It didn’t begin here, though. It had begun earlier that night, as I was sweeping a brush of blush across my cheeks. My hands shook. I struggled to keep hold of the handle as it slipped through my sweaty palms. Still, I continued, diagnosing myself as only dehydrated. Water will fix this.

“CONGRATULATIONS!” everyone roared. 

My heart fluttered again. I wanted to speak up about the issues I was having, but ruining a night like this was not in the plans.

According to my friends, I was there–and then I wasn’t. Unresponsive. Delirious.

The doctor said it was something called a “thyroid storm.” A new diagnosis: Graves’ disease. Hyperthyroidism. That made more sense. Still, water does fix a lot.

“Your thyroid is the butterfly-shaped gland in your neck. It controls your hormones that affect your metabolism. Yours is working overtime,” the doctor explained.

All I heard was “butterfly.” I love butterflies.  

I looked back in confusion.

“Basically, you have too much of a good thing. And it’s a bad thing.” He tried to make it simple for me. But… what?

I was only nineteen. I didn’t pay much attention in school. Probably why that acceptance letter wasn’t for me. 

Anyhow, I was told this was an autoimmune disorder, and me and this disease were going to dance together for the rest of my days, so I had to learn how to live with it. 

As the years passed, the layers of what it meant to live with an autoimmune disease like Graves’ slowly peeled back one by one. “Some of the most common symptoms are: racing heartbeat, trembling hands, weakness in the muscles, difficulty sleeping, overheating and increased sweating, memory problems, anxiety or depression, eye issues, goiter (enlarged swelling of the neck), and unexplained weight loss” (LeBrun). It took many doctor visits, many arm pokes, and many tubes of blood to finally get a correct dosage to help slow these symptoms. But this dosage took years to pinpoint, and by then, the world was a blend of blurry spotlights and foggy outlines. By then, my hand tremors and I became good friends. By then, my arm was too sore from needle pricks to even want to continue the visits. It’s an exhausting cycle. 

I had learned that the most difficult layer of Graves’ is differentiating between proving the symptoms existed or staying silent. There came a time where I wasn’t as vocal about the bothersome symptoms I felt, because, well, no one seemed to notice anyway. The more time that went by, the more the labels silenced me. “Many people with chronic autoimmune disease feel that there is a lack of understanding among those closest to them about their experiences and an unwillingness to learn more about their illness. This can create feelings of rejection, which can lead to increased feelings of isolation and loneliness” (Vitacco). In more than one scenario, the effects of the disease spilled into work life. I was unable to keep my focus at times, or needed to sit down and let my heart rest for a moment. The words “slacker,” “lazy,” and “careless” were used to describe my work ethic, despite my coworkers’ knowledge of my sickness. In relationships, the words “unstable,” “moody,” and “needy” became my personality traits. Outwardly, I was a healthy human being. Inwardly, I was fighting battles no one could notice. These symptoms affect my everyday life. From counting heart beats, to hiding myself in a dark closet to minimize the onset of a migraine, to forcing food down just to gain a pound, this became my normal. The mental toll of controlling mood swings and fighting fatigue wears me down to the point I feel almost inhuman. Floating across the blurry universe, expected to be healthy if I look healthy. “But you don’t look sick,” they’d say.

Eight years ago I was diagnosed with this disease. Throughout personal experiences, I realized how alone it felt to have something like this. I don’t get to decide how I feel based on diet or sleep or exercise. Water won’t fix it. My day is decided by a tiny butterfly-shaped gland in the base of my neck. Medications come and go and dosages change. I don’t want to be labeled as a “slacker” or “lazy.” I don’t want my husband to see me as manic, or depressed, or spun-up. I don’t want to be any of those things. I want to be seen as someone who gets up and does their best every single day to fit into their surroundings. Recognized, not shushed. Understood, not labeled. Millions of Americans suffer from autoimmune diseases. Although many may have obvious signs of a sickness, there are still those of us suffering only internally.

 It is commonly recognized that the feeling of loneliness can be onset by struggling to feel heard or understood. As humans, we have the free will to label or be opinionated about someone else’s lifestyle or issues. Before we label, let us learn. Before we label, let us understand. Before we label, let us give grace. Life is only here for a moment; let us live.

Works Cited

Lebrun, Nancy. “Graves’ Disease: Signs, Symptoms, and Complications.” Verywellhealth, 17 May 2022, https://www.verywellhealth.com/graves-disease-symptoms-5222024

Patricia B. Vitacco, PsyD. “Who Am I Now? Living With An Autoimmune Disease.” Hospital for Special Surgery. 12 Sep. 2011, www.hss.edu/conditions_who-am-i-now-living-with-autoimmune-disease.asp.

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