Disappearing Into Invisible Illness

I once thought Chronic Fatigue Syndrome, Fibromyalgia, and other “invisible” illnesses were a sham. I thought these labels were for patients who didn’t want to work, or for people who wanted disability pay. I thought these people created their illnesses by eating junk food and not exercising. I thought laziness was a main factor. But the universe likes to teach us, and it decided to teach me how this mindset is both narrow-minded and unfair. A little over two years ago, I was diagnosed with a chronic invisible illness. The universe threw a big mirror up to my face and said, “Now what do you think?”

I’ve always tried to be a healthy guy. I eat organic food, I love the outdoors, I enjoy hiking, running, and lifting weights. I’ve never considered myself limited. Then, at age 36, I was working in a pharmacy and preparing for a large remodeling project. The building was old, the compounding lab had been there for a decade, and tearing shelves apart, cleaning, and disposing of chemicals was a large job. I wasn’t alone in these tasks, but I was certainly up to my nostrils in questionable residue. After a few days of this, I developed a sinus infection. Nothing terrible, but it laid me low.

A weekend passed. When I returned to work the pharmacy was crowded into a makeshift side room, a temporary setup while the construction crews ripped up the main area. We had our usual morning huddle, and as I stood there listening to my boss an uncanny wave of dizziness clobbered me. It felt like a bolt had struck my brain. I closed my eyes until it passed. Thinking it was an anomaly, I shrugged it off. But over the course of the next two to three weeks, these strange dizzy spells struck several more times. One day I started feeling sick all over, almost flu-like. As I was walking to the lunch room my legs began to feel heavy and I was flooded with fatigue. My neck became so weak I had to use my hands to hold it up.

I assumed I had contracted a weird virus, or that this was possibly brought on by chemical exposure from work, or worst case scenario, something was wrong with my heart. I went to a walk-in clinic, got hooked up to an EKG, and had my vitals checked. Everything was fine. I was healthy as a horse, they said. It must be anxiety. They referred me to a cardiologist to be safe, but my heart was in good shape. Thus began a long string of doctors, specialists, blood tests, and scans. The docs threw out frightening possibilities: multiple sclerosis, ALS, lymphoma. A rheumatologist discovered I had elevated anti-nuclear antibodies. This suggested an autoimmune disorder, so he began treating me for lupus. During this time my symptoms were debilitating. I often struggled to stand from the couch, my lungs hurt, I had pain everywhere, I couldn’t walk without feeling dizzy and weak, and random muscles around my body would twitch incessantly, 24 hours a day. Every doctor I visited first suggested the issue was psychological, or they dismissed it as anxiety. I began to wonder if I was crazy.

Then, after months of being sick, the illness began to wane. I began having strings of good days all in a row. I began going for regular walks and trying to keep active. My final doctor visit was with a neurologist at Barrow, a nationally recognized neurology center. He said there was nothing wrong with me, that whatever I was experiencing was probably the secondary effects of a virus. I had no reason to doubt his diagnosis, thinking of the sinus infection I had incurred during the pharmacy remodel. But it didn’t matter. I was already beginning to feel better, and I reveled in the thought that I would continue to improve. And, strangely, I did. I began a fitness and diet regimen, I joined a running team, and in a few months I was in the best shape of my life. I felt great. I had my life back.

One day I was out for a run, practicing high-intensity intervals up and down the block in front of my house, and I had another of those uncanny bolts of dizziness. I began feeling excruciatingly tired, so I cut my run short and headed home. Over the next two weeks I struggled more and more during my runs. As the days went on, my old symptoms began popping up again, one by one. It’s just the virus rearing up again, I told myself. It’s just the virus.

Over the next year and a half I would spend thousands of dollars on medical bills and land in the emergency room twice. One day I was reading to my daughter and my throat muscles became so weak I couldn’t speak properly. Fatigue unlike anything I’d ever felt poured over me. I couldn’t stand up from the chair, I couldn’t hold my head up. My wife rushed me to the emergency room for the second time, and I remember struggling to close my fingers enough to pull my insurance card from my wallet. I was again subjected to a host of scans and blood tests, each of which came back negative. The emergency doctor, at least, was sympathetic. She was one of the first providers (besides my primary care doc) who didn’t infer I was experiencing a psychological issue. She suggested I visit the Mayo Clinic, a world-renowned facility known for its advanced diagnostics.

It took months, but I made it onto the Mayo Clinic’s schedule. Trying to find the right doctor was an adventure in itself; not knowing what was wrong meant not knowing who to ask. With some luck, I landed in the autonomic neurology department and in a few weeks I had a diagnosis. I have dysautonomia, a disease that impairs the autonomic nervous system and affects over 70 million people around the world. It’s a package deal, too. Dysautonomia never presents as one thing, as it impacts the entire nervous system. A tilt table test revealed POTS, or Postural Orthostatic Tachycardia Syndrome, a breathing test uncovered chronic asthma, and my other symptoms pointed to Mast Cell Activation Disorder and Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (CFS/ME). This is on the mild end of what other dysautonomia patients suffer. The disease can hold hands with cranial cervical instability, Ehlers-Danlos Syndrome, Sjogren’s Syndrome, and many other life-altering diseases.

It’s a strange thing to be elated when someone says you have a chronic, lifelong illness. But after two and a half years of hearing that I was crazy and having my symptoms dismissed, I now had proof that I was experiencing something real. My elation wasn’t from learning I was sick, it was from relief. I now live in a constant state of self-management. I consume ungodly amounts of salt to keep my heart conditioned, I wear compression pants, and I’ve learned how to recognize when my exertion levels are high enough to make me symptomatic. It’s a balancing act. When I exercise at all, I have to sleep afterward to recover. I watch my Fitbit when I’m out for a walk and turn around when I near 60% of my max heart rate. Some days I want to forget I have an illness and spend the day hiking, or hit the gym and get back into a workout regimen. But reality is always there to wag its finger at me.

The road doesn’t end here. The conglomerate nature of dysautonomia means other issues are constantly popping up, and I may end up with more diagnoses as the years progress. For now, I’m learning the maddening art of acceptance. Not accepting this illness as part of my life means suffering emotionally as well as physically. Being mindful of my thoughts has become a perpetual practice. But having a diagnosis is a huge leg up, something many chronic illness sufferers spend a decade or more trying to discover. I spent over two years feeling like I was disappearing into this invisible illness. But now that I can see it, I can learn how to show up for my life. I can choose how it affects my mind. I will not disappear.

Everything can be viewed as a blessing or a curse. While having a disease isn’t in itself a blessing, I’ve learned to remind myself every day what I’m grateful for. I’ve discovered a large community of fellow dysautonomia patients who uplift and support me. I’ve learned much about the nature of chronic illness, what it feels like to suffer from something others can’t see, and that if someone is smiling, it doesn’t mean they’re not suffering. We can learn much from our tribulations, and if nothing else, chronic illness is a powerful teacher.

We all have our battles, but those of us who suffer from invisible illness often feel isolated. If you know someone with a chronic illness, know that your support and unwavering friendship go a long way. We don’t want you to be our nurses, but we do want you to believe, accept, and stand beside us while we figure out how to live without disappearing.

For more about my journey with dysautonomia, click here.

For more information, visit:

Dysautonomia International

National Institute of Neurological Disorders and Stroke

The Mayo Clinic

I am a fiction author and essayist, specializing in speculative fiction, human uplift, and all things geek. Visit my website at ryandoskocil.com.

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