Since the summer of 2018, I have been struggling with several illnesses that only progressed as the years went by. What made these illnesses initially impossible to deal with was that none of them were detectable by any of the doctor’s appointments, body scans, or laboratory tests that I received. Even worse, the surgeries, antibiotics, and even acupuncture treatments that I went through did nothing to ease my symptoms. While I did find some results for some conditions that I’d developed (i.e., severe mold allergies and one nasty bacterial infection), no one could find any perceptible traceability from those problems to the rest of my symptoms.

The best diagnoses I’ve established between research and consulting with trusted medical professionals is that I was/am suffering from chronic fatigue syndrome/myalgic encephalomyelitis, candida overgrowth, and potentially adrenal fatigue. In addition, my body succumbed to a mental and physical burnout so hard, even taking multiple sessions of medical leave from work did little to reset me.

Despite feeling like I was losing my mind and begging for my body to “knock it off,” getting sick forced me to look at my life and what it had become when I had been too afraid to do it myself. Now that I’ve had more than enough time to do that, I came to several very important revelations.

Getting sick forced me to slow down.

I’ve prided myself on being a go-go-go type of person. In my last two years in college, I was managing a full-time school load, a part-time job in hospital administration, seasonal editorial internships, and weekend volunteering. By the time 2017 (just before “The Illnesses”) hit, I had traded eight years of regular martial arts training and instruction for singing in a choir, voiceover performances and classes, and a much higher ratio of overseas business trips.

I’ve always loved being busy. Unfortunately, that was the problem: by the end, I was simply being busy instead of being productive. There were things in my life that I’d always wanted to do as a career that I instead piled on top of my current career, thinking I could handle it. In addition to that, there were things I was feeling—or not feeling—that I wasn’t letting myself delve into. Why did I have to when I was too busy to even think about them?

Getting sick stopped everything, even the things that I loved doing. For example, at the start of 2020, I finally set up an appointment to record my professional voiceover demo. As I stood in the sound booth to finally record my voiceover demo. As I stood in the booth, listening to the directions my instructors gave me and the energy I should have been able to give, I could barely stand. I was still heavily in denial about what was wrong with me and chalked up my inability to focus or think to my ongoing vitamin D deficiency, despite taking a then-prescribed 4000 UI daily dosage.

This reduced pace of the pandemic was actually a godsend, and not just for the super introvert in me. It gave me a chance to use the extra hours I would be driving to and from work to finally catch up on all that sleep that had been affecting me. However, when 2021 emerged, people were scrambling to return to some minimal level of social engagement, while I could barely fold my laundry.

Every day remained uncertain with how much capacity I could allot. I began ranking my internal levels on a scale of 0 to 100. Most days tottered between 50 and 60. Days at 70 got me out of the house for groceries. The rare days at 75 and 80 had me rushing around, fulfilling doctors’ appointments, and calling friends and family that I had neglected for far too long.

More than anything, however, it had me reflecting.

I’ve had more time than I’ve ever allowed myself to think about what I’ve done with my life.

What am I proud of? Have I been living the way I want or the way I felt I was expected to? If I ever recovered to the point where most of my days stayed around 75 to 80, what did I need to change so that my body never broke down like this again?

The questions didn’t—and don’t—stop. I’ve thought about my friendships, my romantic relationships (or lack thereof), my diet, my exercise regimen, my faith, my personality, my habits, my beliefs. I started researching and exploring the fundamentals of human anatomy, the nervous system, the interconnectedness of quantum physics, the universe, spiritual wellness, and the amount of control the mind has over—well, all of it. The level of introspection revealed how much of myself I was afraid to face and how much of myself I didn’t like or value. Instead, I used the excuse to stay busy to keep myself distracted. It worked—until it didn’t.

I’ll try to explore this more on the blog as time and energy permits. But these are things that I should have been pondering long ago. If I was still jumping from activity to activity to block it all away, I can only imagine how much I would still be in the dark.

I learned to take myself more seriously.

Another revelation I had was that my being busy was just another way to ignore my own needs and exacerbate the need to be a massive people pleaser. And when I say people pleaser, I don’t just mean doing every task that someone requested without question. Unbeknownst to me, I’d cultivated the personality of a perky, positive, jokey, even ditzy child over my adult life. There’s nothing wrong with any of these traits, but—let’s just say that I’ve probably annoyed a lot more people than I intended to. What’s more, it wasn’t who I truly was.

As I got sicker and it became harder and harder to keep up the facade, I doubled down on my behavior. It wasn’t done on purpose, but at the time, it felt like my sense of self, along with my health, was deteriorating. I had never been anything but perky, positive, laugh-it-off B, and I guess I was terrified that if I dropped all of the fakery at once, everyone would see me for what I believed I was.

Boring, negative, sickly, antisocial.

Useless.

I volunteered to lead presentations and attended every event I was invited to. I pulled overnighters, even on business trips, to get things done. I smiled wider, joked harder, and laughed off the troubles more and more loudly. I was desperate to hold onto the only sanity I knew of—even if that sanity was already alienating me from everyone I knew.

I should have listened to my body sooner.

I should have believed it when, while sitting on my couch, the thought of just driving down the road to meet a close friend for afternoon shopping brought me to tears. I should have believed it when, during rehearsals for a presentation at an offsite meeting, I couldn’t remember a single line, no matter how much I repeated my notes aloud.

These days, my body dictates everything. I’ve learned to say no a lot, even if I think I might have the bandwidth to try a little. I’ve also dropped a lot of the pretentious perkiness and settled into a state that is a lot more sarcasm and deadpan, dark humor than I ever admitted I had within me.

As for my own needs—I take advantage of home-delivery services to bring my groceries when I’m too tired or in pain to move. I save my energy for events that mean the most to me and my loved ones. And, even if I hate that I’m tired and think I should work just one more hour—I don’t.

Most importantly—I don’t let myself feel guilty or ashamed for doing it.

Doctors are guides, not fixers.

Here is a summary of the doctors that I visited to figure out what was wrong with me:

  • An ear, nose, and throat specialist
  • An allergist
  • A functional medicine physician who specialized in CFS/ME
  • A gynecologist
  • A neurologist
  • A sleep specialist

I would have gone to a gastroenterologist, but by that time, I’d kinda burned out on doctors—mentally and financially.

Among these doctors, I received endoscopic nasal surgery to improve my “intake of oxygen,” three years’ worth of weekly allergy shots for my severe mold allergies, a boxload of daily high-dosage B vitamins, multiple bouts with antibiotics that wrung my poor gut health through too many ringers, three weeks’ worth of at-home sleep tests to rule out sleep apnea, and a brain scan scheduled at a downtown hospital during the pinnacle of Atlanta morning rush hour.

I’ve been poked, punctured, jabbed, scraped, scanned, medicated, and lectured. However, after they all tried what they’d each felt confident was the solution to my woes, and I was not magically healed, nearly every doctor gave me a similar response:

A surprised stare, followed by a shrug and a lingering, “Welp.”

I don’t blame any of them for not being able to help. Whatever I had was not within any of their medical expertise; there’s nothing anyone can do about that. Instead, their reactions brought me back to a fact that I think doctors themselves forget:

Doctors are just as human—with human-based limitations—as the rest of us.

Granted, they are humans who have gained oodles upon oodles of knowledge and spent years honing said knowledge, thus helping many find relief. However, it felt like the moment most of my doctors were faced with something outside of their knowledge base, they wrote it—and me—off.

TLDR: Many doctors suffer from “I don’t know it, so it must not be real” syndrome.

I realized that good doctors, even if they don’t have the answers, will at least direct you to someone who, even if they too are uncertain, can help you narrow down the possibilities. In my case, it was my chiropractor who suggested I look into food sensitivities or allergies, a suggestion that at least put me in one of the right directions.

The worst, as I experienced with a self-proclaimed “chill” physician assistant, will tell you that “breathing in deeply as you stand up” is the key to fixing years of fatigue, then snap, “Well, what you want me to do?” when you voice concerns that doing that probably won’t resolve all that you have gone through.

(If I could have gotten away with it, I would have called her a whippersnapper and even launched into a “kids these days” rant—one of my long-anticipated perks of getting older.)

The professionals who have been invaluable to me—my chiropractor, mental health therapists and psychiatrist, and even my massage therapist—listened to me at my worst and helped me discern, piece by piece, how I could rebuild my body from the inside out. In addition to being phenomenal and genuine, their insights reaffirmed what I needed to remember:

I’m not going crazy or being melodramatic.
My illness is very, very real.
I am on the right track to heal myself, as slow-going as it might seem.

The little things are now everything.

Last year for my 40th birthday, two of my friends treated me to an interactive art exhibit, and then dinner at the popular establishment, Peace, Love and Pizza (not sponsored). It would be the first time I had “real” pizza since my mold allergy diagnosis. I had been testing gluten-free dough recipes and had plenty of success with pizza sauce from scratch but became rather disheartened when my older sister gleefully called my first attempt at vegan mozzarella balls “snot”.

As a brief refresher on what mold allergies entail, pretty much anything with a propensity to contain molds or fungi must not be touched, inhaled, or consumed. In other words, in addition to mold around the house and mushrooms, foods or beverages that are aged, excessively processed, or fermented had to be avoided. That means no dairy, no corn, no wheat, no yeast breads or desserts, no vinegar, and no alcohol. I.e., a large chunk of my daily diet. The severity can vary based on the individual, but for me, this was life.

Back to Peace, Love, and Pizza. From what my friends had told me as we entered the restaurant, this pizza chain specialized in pizza and calzone options for a clientele with varied food restrictions and preferences. This was in addition to providing classic favorites with quality, health-conscious ingredients. Vegan pizzas were available, with dairy-free cheese, olive oil, and even pesto-based sauces (seriously, not sponsored!).

One of my friends who was lactose intolerant ordered a pizza with dairy-free cheese. I immediately selected a make-your-own-pizza with a cauliflower crust but paused when I reached the cheese selections. Over the last couple of years, I’d stuck judiciously to the no-dairy rule. Almond milk became my main substitute, and I’d dabbled in homemade pizzas topped with Daiya, Follow Your Heart, and Violife vegan cheeses. I’d also been getting my immunotherapy shots regularly, progressing from the once-a-week frequency all the way to once a month. I hadn’t had any allergic reactions in months, and even my chronic fatigue symptoms had steadied at approximately 65 to 70 per day.

Normally, I’ve never been a huge birthday celebrator. I’m not big on presents or parties. If at least my family and closest friends wish me a happy birthday, I am happy.

But this birthday was special. I was 40: the official midlife crisis zone. I was at a pizza parlor after years of being deprived of my favorite desserts and nearly all fast food options. I wanted a pizza—one with real cheese. And dagnabbit, I was going to get it and would happily suffer the consequences.

When each of our pizzas arrived, I reverently pulled a slice from my tray and watched as the steaming mozzarella stretched and strung from my piece to the original pie. It never even touched my plate before I lunged forward and bit into it.

As the tangy tomato sauce burst across my tongue amidst the subtly salty, gooey, and chewy cheeses and the earthy base of spinach, I felt a return to myself. A simple delight of a long-untouched pleasure, of feeling well enough to leave the house and risk restaurant cuisine, and of enjoying it amongst friends. Another year met, another chance to appreciate the good days and the little rays of light that broke through the clouds. The pizza was that good (really not sponsored!).

But also, thank goodness for the insurance of activated charcoal pills, which my lactose-intolerant friend had been kind enough to supply.

meat lover's pizza with cheese
Photo by Horizon Content on Pexels.com

Creativity is my lifeline.

As the popular adage goes, you never know what you have until it’s gone. I won’t say that I have the most brilliant, creative mind ever, but I will say that I’ve always had several creative and artistic outlets that brought me an inner peace that not even meditation could match.

Imagine then, if you will, how I felt when being sick robbed me of the mental capacity to do any of them.

Late one 2022 night, while I was staying with my mother during some of the worst of my illnesses, my frustrations hit a peak. Though I was physically exhausted, I wasn’t sleepy. I had fallen into an insomniac limbo, and bundles of energy were building up that needed to be expended. My head felt like it was packed with cotton; the very concept of doing something that required excessive thought was out of the question. Still, I had to do something—anything—to express myself.

compass on graphing paper

I dove into the bedroom closet and grabbed my shoulder bag of art supplies. As I snatched out one of the sketchbooks and my box of over 100 colored pencils, a glint of silver caught my eye at the bottom of the bag. I reached down and pulled out a drawing compass, complete with a sharpened piece of graphite.

Settling down on the carpet, I opened my sketchbook to the first blank page, took my compass, and started spinning it randomly across the paper. Over and over again I swung it, not caring if I overlapped, pausing only to narrow the vector for smaller circles, pulling out for larger ones.

Finally, I lifted the compass and checked my work. I didn’t even know what I was looking for; I didn’t have enough capacity to fully understand what I was doing. I guess I had enough to start, because I put the compass down, opened the box of colored pencils, selected one, and began coloring.

The direction, cohesion, and even the purpose of what I was doing were the last things on my mind—though I’d argue if anything at all was on my mind. I was driven solely by need.

I needed to be creative. I needed to express myself. It didn’t need to make sense; I just needed to get it out.

Over the next several months, I went back to that art, coloring in a circle or two when the buildup of creativity rose among my brain fog. It was my knitting project, my ever-tweaking piano composition. The first time my mother caught me working on it, she exclaimed warmly, “Well, isn’t that pretty?”

I looked at her blankly, then stared at what I had been coloring for several weeks by that time.

“…Oh, yeah,” was all I thought to say, finally taking a second to look at the picture as a whole. “I guess it kinda is, isn’t it?”

Conclusion

Even if whatever illness I have is not chronic fatigue, adrenal fatigue, or burnout, it’s definitely not easily detectable. In turn, it’s not easily treatable. My best solution is to simply eat healthily, get a regular amount of mild exercise, and rest, rest, rest. Despite the claims of increasing my B vitamins for energy or even getting oxygen therapy, there is no “quick fix,” no one-drug resolution.

And yet.

I’m grateful that my body and mind recognized that I was moving in the wrong direction, even when my bullheadedness refused to acknowledge it. My primary goal now is to continue listening to myself beyond just my health, but also when I make certain decisions and life choices. I have a strange feeling that working towards my true purpose in life will help mitigate my symptoms more than any medical treatment ever could.