Even with my eyes closed, the fluorescent lights were bright–too bright. I would’ve tossed and turned, done anything to rid the restlessness, except for that I was exhausted, too tired to move. My body tingled, my muscles twitched, I lay still in the hospital chair. The nurses let me be.
I felt like I hadn’t slept in a year. I mean, I had, but when you wake up more tired than when you went to bed, does that really count as sleeping? Sleep should leave you feeling rested, refreshed; I hadn’t felt that way in a long time.
Eventually, I heard someone call my name, softly.
“Ms. Howells,” they cooed. They sounded a million miles away. I began to blink my eyes open, and found two white coats standing above me.
The ER attending and her resident were tall, slender, looming. Through the fog that swaddled my brain, I questioned whether they were real. The woman in the white coat spoke carefully, saying, “We’re so sorry, but there’s nothing we can do to help you right now. We recommend you follow up with your primary care provider and…”
I tried to follow to the rest of their words, but they were leading me somewhere that I didn’t want to go: more frustration, more disappointment, deeper despair and terror. I tried to keep my composure and nod at all the right times, but it was so hard. I wanted to go home. Not back to my dorm room, but home. I wanted to be anywhere else in the world but that overflow ER room with its needles and saline and doctors who couldn’t tell me what was wrong.
The mouths of the white coats continued to open and close, their voices coming in and out like radio static. I wanted to shut it off. The frequency was piercing.
As the attendee finished her final discharge instructions, her face softened and I watched her mold into a mother. At once, her fierce features relaxed and the secure command she’d worked years to obtain as a woman in medicine fell away before me.
“I have a daughter your age,” she spoke into the space between us. “It must be so tough going through all this in college.”
I was unaware that what she’d say next would anchor me in the approaching medicine-filled months. I didn’t realize that such a brief display of empathy would salvage my tarnished relationship with doctors and remain as proof throughout my diagnosis journey of real goodness amongst all the terribleness in life.
“You’re superwoman,” she continued, implying strength, “and you’re gonna change the world someday.”
Her kindness stunned me, startled me, snapped whatever shabby thread that was barely holding me together. It was like a flash of light, so bright and intense, I had to look away.
With my eyes to the floor, the physicians left and I broke apart in the hospital chair. Having lost the willpower to fight back, I released the tears that were already flowing. They covered my face like wounds, like war paint, like a shield. In my tears, I found my armor. In my vulnerability, I found strength.
…
This past Thursday was the two year anniversary of my POTS diagnosis. The day marked two years of progress and recovery, two years of healing and brokenness, two years of learning to navigate life with a fussy, dysfunctional nervous system. Last year, December 16th felt like a funeral. This year, it felt more like a birthday party, a celebration of strength reborn.
To honor the day, I dressed up as Superwoman. The costume felt significant not only because it links to the impactful encounter I had with an ER doctor, but also because it relates to two of my favorite poems written about disabilities: “Wonder Woman” by Ada Limón and “Going Blind” by Rainer Maria Rilke.
A photo of me dressed up in a Superwoman costume. I’m holding up a peace sign, to symbolize my 2 year anniversary of being diagnosed with POTS.
“Wonder Woman” by Ada Limón shares the story of a woman’s experience with chronic, invisible pain. After a discouraging ER visit, the woman spots a girl dressed as a superhero and is reminded of her own, “indestructible” strength:
“Standing at the swell of the muddy Mississippi after the urgent care doctor had just said, Well, sometimes shit happens, I fell fast and hard for New Orleans all over again. Pain pills swirled in the purse along with a spell for later. It’s taken a while for me to admit, I am in a raging battle with my body, a spinal column thirty-five degrees bent, vertigo that comes and goes like a DC Comics villain nobody can kill. Invisible pain is both a blessing and a curse. You always look so happy, said a stranger once as I shifted to my good side grinning. But that day, alone on the riverbank, brass blaring from the Steamboat Natchez, out of the corner of my eye, I saw a girl, maybe half my age, dressed, for no apparent reason, as Wonder Woman. She strutted by in all her strength and glory, invincible, eternal, and when I stood to clap (because who wouldn’t have), she bowed and posed like she knew I needed a myth— a woman, by a river, indestructible.”
“Wonder Woman” by Ada Limón
“Going Blind” by Rilke recounts the isolation of illness and how the idiosyncrasies of disability can access a world unreachable to the abled person. In the last line, the poem’s translation suggests that in some ways, having a disability is like having a superpower:
“She sat at tea just like the others. First I merely had a notion that this guest Held up her cup not quite like all the rest. And once she gave a smile. It almost hurt.
When they arose at last, with talk and laughter, And ambled slowly and as chance dictated Through many rooms, their voices animated, I saw her seek the noise and follow after,
Held in like one who in a little bit Would have to sing where many people listened; Her lighted eyes, which spoke of gladness, glistened With outward luster, as a pond is lit.
She followed slowly, and it took much trying, As though some obstacle still barred her stride; And yet as if she on the farther side Might not be walking any more, but flying.”
“Going Blind” by Rainer Maria Rilke
I’m a big fan of the way these poems showcase the inner struggles of illness that often go unseen. I love the way Limón and Rilke find power in debilitating circumstances and see strength in moments of weakness and vulnerability.
It’s taken me a while to uncover strength in my worst memories (and a lot of work with my therapist). For the longest time–two years to be exact–I saw only pain, tears, and terror when I reflected on my lowest moments. I’m learning that strength doesn’t always look how we think it should. Contrary to popular belief, it takes strength to let yourself cry, or to ask for help and receive it. Sometimes, strength can look like weakness.
In full disclosure, the Superwoman shirt was actually supposed to be a Halloween costume. It was to be a costume only I knew the true significance of, but when it arrived late on November 2nd, I had to reassess my plans. Instead of returning it, I figured I’d save it for a day when I needed some strength. As December 16th rolled around, the shirt felt increasingly more relevant.
A picture of my Superwoman costume.
The day before Halloween, an intern at physical therapy asked me if I was dressing up for Halloween.
“I’m gonna be a superhero,” I said. “Superwoman.”
Despite her mask, I could see her eyes crease into a grin.
I wasn’t planning on taking a break, and I also wasn’t planning on having such an eventful summer. Two summer classes kept me busier than I thought I’d be, and I took my first solo trip to visit my brother in North Carolina. Traveling alone taught me that I’m capable of more than I believe, and through my physical anthropology course, I learned more about being human. Weeks later, when my uncle and grandfather passed away, I learned a lot about grief, too.
I learned that grief can be sneaky. It can show up in unexpected ways like stress, poor sleep, and sharp, short tempers. I learned that grief reveals as much about death as it does about life, and that in many ways, grief is like plunging the heart in frigid water. Once the initial, blinding shock wears off, the fierce cold intensifies each and every breath, reminding the body it is acutely alive.
In the midst of my grief, I started a new semester of school. With a heart stuffed with sorrow, hope, and longing, I stepped foot on a college campus for the first time in 2 years. Feeling more like a kindergartener than a junior in college, I navigated quaint classrooms and picked seats in rooms full of socially-distanced students. The ordinary had never felt so peculiar. In the excitement of a new school year and the heaviness of my grief, I had never felt so sad yet so hopeful at the same time.
Going back to school has been a fresh new beginning for me. I entered a new school with a new major and a body with a new baseline and limitations. Walking around campus with a backpack full of beta-blockers, I felt nothing like the freshman I was in 2018. Strolling underneath the verdant trees on campus, I’d almost forgotten how traumatic my prior college experience was. Almost.
Last Friday, as I made my way out of class, another student stopped me in the stairwell.
“Do you watch Grey’s Anatomy?” she asked, catching me by surprise.
It took me a moment to register that she was talking to me, and another moment to realize the weight her question held.
In an instant, I was transported to my freshman dorm room where I was limp in my bed, watching Grey’s Anatomy on repeat. Exhausted from the ER visits and doctor’s appointments I’d wedged into my full schedule, I used the television series as an escape, as solace. Grey’s Anatomy eased my initiation into the medical world, and some part of me cherished watching the fake doctors fight hard for their patients. In my fear and overwhelm as mysterious symptoms took hold, I couldn’t help but hope some doctor would do the same for me.
“I used to, yeah,” I managed.
“You look a lot like Jo. You know, the one who was Alex’s girlfriend.”
Under my mask, my face flushed and I smiled.
“I take that as such a complement, because she’s so pretty!” I said.
Photos of Camilla Luddington, the actress who plays Jo Wilson in “Grey’s Anatomy.”
We pushed through the heavy doors, ripping our face masks off as we plunged into sunshine. The humid air felt tangible as she asked me where I was from.
“You’re from overseas, right?”
“I’m not but my parents are, actually.”
Too stunned to do anything else, I smiled. In some way, it was like she already knew me. Like we were already friends.
We chatted for another minute before parting ways. I walked away, feeling a little dumbfounded by our conversation.
While her questions were fairly typical, and her comment a mere passing thought, what she said felt profound to me. It was a complete, full circle moment.
Immersed in my Fresh New Beginning, I naively thought my past couldn’t catch up to me. I thought what had happened in Nashville would forever stay in Nashville, and that as I healed, the hard memories would rest somewhere far behind me.
But as I drove home that day, I realized that even though the past is the past, we carry every moment of our lives with us, into the next. The part of me that was sprawled out on my dorm room bed, glued to episodes of Grey’s Anatomy and gaining awareness that an illness was beginning to wreck my life, walks with me on UT’s campus. She looks up at the same beauty in the sturdy trees overhead. She feels the same shimmering sunlight glittering upon her face.
That girl’s comment felt like a reminder to take note of where I am, how far I’ve come, and how much of my life has changed. Her words were like confirmation that I’m in the right place upon the right path and no fatal mistakes have been made. In her encounter, I found permission, encouragement, and guidance to keep going, to keep moving forward, to have faith in what comes next.
Sometimes I wish POTS had never happened to me. Sometimes I wish my life had never been interrupted by the pain, the loss, and all the grief it’s brought me. Without POTS, my life would certainly be easier, and if I could wake up tomorrow cured, I would in a heartbeat. But I also know that without this deep well of pain, my joy would be much more shallow. I wouldn’t know how lucky it is to stand in the shower because I wouldn’t know how much it hurts to have the ability taken away. I wouldn’t live my days with as much intention as I do, because I wouldn’t value my energy as a currency that’s finite.
In the words of Nora McInerny, “We don’t ‘move on’ from grief. We move forward with it.” And each day, as I load my backpack with books and salty snacks, I make some space for that exhausted, fearful freshman. She deserves this new beginning just as much as I do.
It was a Monday, I remember. Crisp and cool and cloudy. The gloomy sky casted a layer of darkness upon the house, but the clouds would later part to reveal a glorious winter day. Weather-wise, at least.
I started my morning with peanut butter and banana oatmeal, a meal notorious for making my POTS worse. It’s because of the carbs and unexplainable food sensitivities, but a year ago, we didn’t know this yet. We only knew that it increased my symptoms and we wanted all my various symptoms present for testing that Monday afternoon. So, breakfast was planned accordingly.
The directions said to shower before the appointment, so naturally, I obeyed. Doctor’s orders. I threw on baggy clothes as per requested, and when I was done, I crawled to the living room couch, where I blocked out the world with a Netflix documentary. Well, I tried to anyway but quickly failed as my eyes kept searching for the clock.
At noon, I was scheduled for autonomic testing. A medical technician in a room worlds away would conduct four series of tests to observe my autonomic nervous system. These tests would measure my nervous system’s ability to regulate sweating, blood pressure, and heart rate, hooking me up to various wires while strapped down to a Frankenstein-like table. All the equipment scared me, no doubt, but to continue to live without answers scared me even more.
Eleven o’clock came quick and my mother shepherded me to the car. When I made it to the front seat, I reclined to a supine position, my body’s favorite position, and turned the AC down as low as it could possibly go. My mother, who needs a jacket during August in Texas, zipped up her jacket and endured. She’s selfless like that, and I’m forever grateful for it.
When I arrived at the neurologist’s office, I seemed to be the only one who was ready. A four month wait will do that to you, so I watched office staff hurry about from a cushioned chair in the waiting room. It’s funny really, waiting four months for a doctor’s appointment only to sit in a room designed for more waiting. That’s perhaps the hardest part of any diagnosis journey, waiting in the wreckage of an old life, loved and lost.
I wasn’t necessarily hoping for a diagnosis, except at this point, I pretty much was. It was more so that I was tired of wasting away in the Land of the Unexplained. While waiting on referrals and medical testing that was apparently in high demand, my sporty build had left me as my unknown condition worsened. As my inability to tolerate daily life grew, I felt like a shell of my old self, a vibrant girl withering away. Once, while watching television, I looked down and couldn’t recognize my legs. The strength I’d built up from ten years of swimming had gradually waned away, and to my horror, my legs now resembled twigs.
Those days, I was always so close to breaking. One harsh gust of wind, and–snap.
Eventually, the nurse called me back, taking my vitals before wiring me up. When I stepped on the scale, I noticed I’d lost ten pounds and in a weird way, I felt almost relieved. It was strangely comforting knowing some of my loss could be documented, not only my loss of weight but of my vibrancy, strength, and energy too. The numbers would get written down, saved forever in my medical chart, serving as some kind of evidence that I was no longer all I used to be, that I had lost some of myself in this lengthy, cumbersome journey.
That’s perhaps the hardest part of any diagnosis journey, waiting in the wreckage of an old life, loved and lost.
As the testing began, I felt thumping so strong it seemed to shake me. I chalked it up to likely footsteps of a busy nurse out in the hallway, but after several minutes I wondered whether the thumping was coming from somewhere within. My heart, it seemed, was revolting. Its pounding was almost painful.
Lying there on the medical table, I braced myself for what was to come. The autonomic testing would conclude with a tilt-table test, the most brutal test out of the four. From my supine position, the table would be raised to simulate standing, and over the span of ten minutes my heart rate, blood pressure, and symptoms would be recorded, unless, the technician explained, I fainted. If I fainted, the test would be stopped prematurely. I didn’t know which outcome to hope for.
Graphic explaining how Tilt-Table Tests are conducted.
For an average, healthy person, a tilt-table test is no big deal. Their body adjusts to the pull of gravity by constricting blood vessels in the legs, properly sending blood back to the brain with only a marginal increase in heart rate. For a person with POTS however, this test is borderline torture.
Not even a minute into the test, I began to struggle against gravity. Sweating, shaking, unable to breathe, I squirmed beneath the table’s restraints as each of my symptoms were recorded by the technician. I called them out, plainly, the way he asked me to. “Dizzy. Heart palpitations. Shortness of breath. Fatigue.” Later, I would learn, my heart rate was soaring at 150 bpm.
Strapped down to the table, there was nothing to hold onto. I had to find something internally instead, some invisible inner railing that would support me and the weight of that afternoon. As my heart hammered on, I began to translate each pulse; every beat of my heart was my body battling to keep me conscious and upright. For a moment, I felt thankful. I have never felt my body fight for me the way it did that day.
Around minute five, in a moment I can only describe as dreamlike, I looked out to the wall I was now facing, only it wasn’t a wall. It was a window. It had taken five minutes before I realized that in the raising of the tilt-table to a steep 70 degrees, I was now directly facing a giant, glorious window. Before me, there was a golden, shimmering tree, and its leaves shook in the strong wind like confetti for a celebration. For a brief second, it looked as if the leaves were waving at me. From the depths of rock bottom, I said a silent hello.
Staring at that gold tree, a sense of calm swept over me. In the cold, clammy doctor’s office, I found a trace of light and beauty. It was an unthinkable event, unnatural even. And for the rest of my life, I will never forget the way that tree muted my screaming heart. It gave me a minute of peace in a moment of hell and even still, a year later, trees everywhere do the same.
We were told the testing would take about two hours, but in the end, it was closer to four. Walking into that office, I had little left other than slivers of hope and sanity, but walking out, I carried pamphlets and at long last, a diagnosis. After two years of living in utter fear and confusion, I finally had a name to my bizarre collection of symptoms: Postural Orthostatic Tachycardia Syndrome.
Not only did my diagnosis give validation to my invisible illness, but with it came a plethora of resources that were essential in my recovery. I now had access to physical therapists, dietitians, school accommodations, and more. I also now had an explanation for when people asked me, “What’s wrong?” While for some, a diagnosis feels like the ending of a life, for me it was more like a beginning, a chance to one day live again.
This time last year, I was strapped down to a medical table with wires and electrodes glued to my skin. It was yet another diagnostic test that would be my last in a soul-sucking series, and I was scrambling to hold onto my sense of self within the exhaustion and medical machines. It’s been a year now of officially living with POTS and I’m delighted to report I’m doing much better now. When I think about how I feel towards my progress and recovery, “gratitude” doesn’t even begin to cover it; it is relief at a visceral level, an infinite stream of thank you thank you thank you.
A picture of me from October 2020, walking around Centennial Park.
Last Monday, I drove up to the pond near my house. I like to go there a lot and, well, look at trees… On my way there, I passed my neighbors who were collecting their mail at the mailbox. The two young girls, maybe six and eight years old, wore the kind of matching, neon jackets that only young children can pull off. They jumped up and down with glee, ecstatic about a simple errand shared with their mom. It was a moment that moved me to tears, but not in the way you’d think.
For a split second, I imagined them all grown up and strapped down to a medical table. Unable to hide my horror at the thought, tears poured down my cheeks as I (dangerously) unraveled behind the wheel. So clearly, I could see them hooked up to wires, awaiting a tilt-table test in all-consuming fear. I pictured their mom fidgeting out in the waiting room, wondering how she and her baby girl wound up in a neurologist’s office on a sunny Monday afternoon.
It’s possible those girls might get POTS one day, too. I hope to God they never do.
But if they do confront fates similar to mine, I would want them to know it gets better. It gets a whole lot better, even when it’s still hard. I would want them to know they’ll never believe how strong they will become, or how much joy can be found in the simplest, smallest things. I would want them to know this illness will change them in every possible way, and although they might resent that for a little while, eventually they’ll learn it also sets them free. More than anything, I’d want them to know about hope. How it saved my life and has the power to save theirs too.
If I could, I would tell all this to the version of myself strapped to that tilt-table, too. I’d kneel down to the side of that Frankenstein table, holding her hand through all she is about to endure.
I was asked this question once, a little over a year ago. I was standing on stage at the time, shaking from a mix of nervousness and malaise. Not only did I feel unprepared for the musical theatre final exam performance I was about to give to my professors, but I realized I was unprepared to answer a question as loaded as this one.
When I received this question, I had spent the previous five weeks juggling classes with doctor’s appointments and an assortment of debilitating symptoms, and the thought of opening my mouth and singing Italian arias seemed like an impossible request. I was still waiting on referrals that were over a month away, constantly calling doctor’s offices to check on waitlists and possible openings while also recovering from an unexpected trip to the ER. Most people in my circle of friends and professors knew I was battling health issues, but none of them understood the full extent of that struggle. It felt as if I had a front-row seat to the unraveling of my old life but at the time, I seemed to be the only one who knew it was ending.
Those six words and their question mark peered over me like a magnifying glass. Standing on stage atop the small blue X, I imagined myself shrinking to the size of an ant, scurrying in circles under the collective gaze of my inquiring, well-meaning professors.
It felt as if I had a front-row seat to the unraveling of my old life but at the time, I seemed to be the only one who knew it was ending.”
My mind went into overdrive as the minion operating my brain scrambled through crumbling towers of hurt. How would I reveal there was an unnamed, invisible illness running rampant beneath my skin? How would I disclose that my lack of a diagnosis meant a lack of adequate treatment and a lack of adequate treatment meant a progression of my already debilitating symptoms? How would I explain that underneath my fancy dress and full face of makeup, I had never felt more unwell, that the short walk to that auditorium was a disabling excursion that would wipe me out for the rest of the day?
Under the bright yellow light inside the auditorium, I struggled to find the words that would fully illustrate my predicament. As I stalled and stammered, the bright lights appeared to close in on me like a tight, unmoving spotlight, and I half wished I’d look up to see it coming from a search helicopter overhead, arriving just in time to rescue me from the suffocating situation.
The panicked minion operating my mind.
I didn’t know how to tell my professors that I wasn’t “all better now”, that I wouldn’t be for quite a while, and that I was at the beginning of a diagnosis journey I was terrified to embark on. And even if I did somehow manage to find the words, would they even believe me? I stood before them in a full face of makeup plus heels and curled hair and a formal, flattering dress. I looked like all the other well, abled college students, resembling an attractive, healthy version of myself when really, it all felt like an extravagant costume. The attire that really suited me was back in my dorm, a crinkled mess of smelly sweatpants and a sweater, paired with a heating pad and my laptop for yet another evening in bed.
The rest of this memory is fuzzy now, and I can’t quite remember how exactly I replied. I’m almost certain I said something polite and gentle, probably adding a tasteful, weak laugh to mask my surprise and exasperation. I can tell you with full certainty that I didn’t say what I truly wanted to say, which would’ve been something along the lines of, “THIS IS THE WORST POSSIBLE QUESTION YOU COULD ASK SOMEONE WITH DEBILITATING, ONGOING HEALTH ISSUES!” I can tell you with unwavering confidence that I responded in a way that I always felt I had to: too kind, too polite, sacrificing my comfort for someone else’s.
Now, I have to give credit to the professor who asked me this question. They didn’t know what was wrong with me, and frankly, neither did I. My illness was still undiagnosed and also invisible, so only I truly knew the intensity of my symptoms. But from the very first appointment with my internist, I understood finding a name and explanation for my wide assortment of symptoms would be a long, tedious process. Referrals, I learned, took time, as does waiting for insurance approval and tracking said symptoms, and searching for a diagnosis can be a long, brutal game of ruling everything else out.
Eight months after receiving this question, I finally was diagnosed with Postural Orthostatic Tachycardia Syndrome (also called ‘POTS’). For those of you who don’t know, POTS is a dysfunction of the autonomic nervous system that is characterized by rapid heart rate, dizziness, and fatigue among other symptoms whenever the body is upright. Thanks to a grueling tilt-table test, at last I could put a name to what I was experiencing; to say I was relieved is an understatement.
Because there is no cure for POTS, treatment consists of managing symptoms. This is typically done through medication, physical therapy, and increased salt and fluids, however one of the challenges to POTS is there is no “POTS Pill”. Because the autonomic nervous system controls the entire body, this can lead to the need for various MD specialists as well as individualized treatment, due to the fact that this condition affects every patient differently. Will I be stuck with symptoms forever? It’s hard to say, but my neurologist is hopeful I’ll recover in two years (this depends on the cause of POTS – for some people, POTS is a lifelong battle, but prognoses are general estimate anyways). So after these two years, will I be free from POTS forever, never to have another symptom or flare again? I truly don’t have an answer to that, but that sounds like a dream come true.
It’s certainly daunting to be diagnosed with a chronic illness (especially when you’re young!! But that’s a blog post for another day…). It sounds like a hellish promise (“curse” is fitting too) that one will feel horrible every day, all of the time, for as long as they shall live. The reality is, there are good days and bad days, and on average, I land somewhere in the middle. In other words, I’m a frequent flier between the land of well and unwell.
Image of an airplane.
That being said, I have yet to have a day that was entirely symptom-free since developing POTS a rough two years ago. Symptoms still constantly interrupt my life, and even though I’ve learned how to integrate these limitations and restraints, I’m far from liberated by this debilitating illness.
But despite the frequency of my many, many symptoms (lol), the intensity has lessoned recently. Thanks to my doctors, physical therapy, and my magical dietician, I can tolerate much more activity than I could just a few months ago, and I have gained back quite a bit of freedom and independence. (Last week I drove myself to and fro my physical therapy session, which in total is over an hour of driving AND I worked out for an hour AND I stopped for lunch AND I took the long way home!! Major win!). These past few months have been much kinder and bearable for me, and oddly enough, in this time of better days, I’ve found myself asking that same loaded question.
“So are you all better now?”
Because I am doing better, there is a part of me that assumes I have to be “all better now”. That I can’t ever step backwards, that I can’t still be sad about getting sick, that I must be happy and grateful about all my progress and achievements. And in a way, it makes a lot of sense. Why wouldn’t I be happy about not feeling as sick as I used to? That alone is reason to celebrate! But the reality is, I’m still processing all I’ve been through. The reality is, I’m still not where I’d like to be. The reality is, I still feel sad that I have POTS. Still totally enraged. Still utterly in shock.
Even as I recover physically from POTS, there are hurdles in my mind that I’m continuously tripping over. There is a fear that follows me everywhere I go of what symptoms might arise, what activity might spark a flare, or what new episode might take over my body. This loss of control is still terrifying to me, and this disabling fear lurks in the background of my life like a camouflaged predator I can never outrun.
I’m doing better, but I’m not “all better now”. I hope one day I might be, but for now, I take it day by day. Healing from chronic illness often feels like a daily dance of baby footsteps; sometimes forwards, sometimes back, sometimes it’s merely a side shuffle, but the key is to just keep moving. These steps can feel discouraging when everyone else is whizzing past in a smooth, effortless waltz, but I choose to keep dancing with the hope that one day, all these baby footsteps might take me to that hazy horizon of healing, to that final, epic finish line of recovery, and to the top of this mountain where I can look down and say “I made it. I actually finally made it”.
It started with a viral illness. Maybe it was from the mono during my senior year of high school that I never really felt better from, or maybe it was the upper respiratory infection that landed me in the emergency room during my freshman year of college, fainting on a Friday morning. Which one was the initial onset, it is difficult to tell, but for the past three years of my young adult life, I have battled daily, chronic fatigue, followed by dizziness, heart palpitations, chronic pain, and more. The first two years of this time was spent denying, ignoring, and wishing my illness away, until about a year ago when it exploded all over my life, forcing me to rebuild atop the wreckage. I was dragged into the chronic illness world kicking, screaming, spitting out every obscenity I know, and like so many others, it was a world I never planned on visiting, or getting to know so well.
The first time the name “POTS” would ever be spoken to me would be in May of 2019, in the middle of a lengthy diagnosis journey. I’d been waiting on referrals for rheumatology and sleep neurology, terrified, impatient, and exasperated at how much of my worsening condition was still unknown. At the time, “POTS” was only a story about a friend of my brother, the diagnosis of a swimmer who’d battled headaches and vomited when she stood for long periods of time. In the retelling of her experience, I listened as the words “can’t stand”, “throws up”, “horrible headache”, and “no cure” poked through the narrative, striking details of a burden I couldn’t fully understand. “POTS” was still a cluster of cooking containers to me, the thing you use to heat food on the stove and the dish that’s a pain to clean. It was just a random acronym, a group of bold letters that had no significance in my life. Or so I thought. I was unaware at this point that “POTS” was in fact the name of the illness running rampant beneath my skin; the name of a chronic condition that would soon take more and more from me; the diagnosis I’d receive by the end of the long year. I remember blocking out her story, thinking my doctors would surely figure out what was wrong with me, but three months later, I would walk out of their offices empty handed, my heart dragging behind me on the ragged, grey pavement.
The next time I’d hear the name “POTS” would be in my internist’s office that August, three months following the story of my brother’s swimmer friend. It was during a follow-up appointment to regroup and address my unnamed illness when she threw out that vaguely familiar name. She stated “POTS” was essentially the only likely condition we had yet to test for, a condition that affects the autonomic nervous system and is characterized by high heart rate and fatigue. It’s known to occur in young women, and considering my heart was pounding away at 110 bpm just sitting on her table, my persistent, prevalent symptoms were enough to enquire. She wrote a referral to an electrophysiologist, wished me good luck, and I walked out the office, clutching her doctor’s note like it was my last and only hope. At that point, it was.
I went home and googled, my heart fluttering as I read symptoms that outlined the past year of my life. Heart palpitations, fatigue, fainting or near fainting, lightheadedness, tremors, shaking and nausea. There were GI issues, headaches, brain fog, and muscle aches. Temperature deregulation, vision changes, fast, rapid heart rate; almost everything under the sun and almost everything I’d experienced. That day I felt something I hadn’t felt in months. A tickle in my gut, an internal spark, an igniting of hope that had almost burnt out. The path forward was narrowing, a horizon finally breaking in the distance, and I wondered if walking down this road, if following this referral might finally lead me onwards and through.
I didn’t know that despite the right direction, the road would still be bumpy, plagued with heartbreak and loss. I didn’t know the road would still be a lengthy one, that although I was closer to a diagnosis than I’d ever been before, I was still three months away from sitting in the office of a doctor who could finally, actually help me. I didn’t know what was to come, I only hoped it would bring answers.
I received the referral in August, after an entire summer of medical testing, but school was set to start by the end of the month. In my mind, the summer I had just spent as a professional patient, completing three sleep studies, countless blood draws, an EEG, and a CT and MRI of my brain should’ve brought the answers I was looking for. I should’ve been going back to school with a diagnosis, with everything tied up in a nice, neat bow, figured out just in time to protect my precious plans. But the new patient appointment with the electrophysiologist wouldn’t be until October, halfway through the semester. Would I stay home from school to continue my quest for a diagnosis? Or would I continue it in an entirely other state and try to get a referral there?
I made the decision to return to school in the meantime, thinking I could either wait at home twiddling my thumbs, or I could wait at school, with homework and friends to keep me busy. Looking back, this was a bit of a mad decision, considering my body was far from well and crushing fatigue was constant, but with no diagnosis, I felt I didn’t have a concrete reason not to return. Plus, I didn’t want the unnamed illness to disrupt my life more than it already had. I’d pushed through with this unknown condition long enough, couldn’t I push through just a little longer?
I made adjustments to my schedule, leaving a demanding but beloved major. It was a hard decision but I knew it was best for my health at the time. I’d shorten the amount of hours I’d take that semester, nixing any physically demanding classes, and I’d let all my teachers know I was dealing with ongoing health issues. My doctor was kind enough to write a note, officially asking for assignment and attendance flexibility, and although I didn’t know if I could make it through the semester, I knew I wanted to try. I’d go to school while waiting for autonomic testing, praying my optimism would protect me from failing. I clutched my hope like it was a metal shield, hiding behind its sturdy support, but soon I would learn no amount of hoping could salvage the unraveling of my old life. It couldn’t save me from the pain, and it couldn’t reverse what was already in motion; nothing could. My illness would ultimately consume my life, and there was nothing I could do about it.
I lasted five weeks into the semester. In those five weeks, I never once completed a full week of classes. I crashed in bed at four in the afternoon, listening to my roommates come and go, off to parties and rehearsals, meeting up with friends. Lying on my bed, I’d watch the sun set every evening, alone, scared, and feeling so tired I could hardly move. Three weeks in, I visited my doctor in town, trying to get a referral to a local dysautonomia clinic, but it took six weeks to even schedule an appointment. By the fifth week of school, I ended up in the emergency room yet again, due to a 170 bpm heart rate while walking around my apartment. With my illness spiraling out of control once more, and after years of pushing and pushing my body to keep up, something inside me gave out, snapped, decided it had had enough. I wouldn’t be finishing the semester, and I wouldn’t find some way to miraculously soldier on. I would be going home, waiting on referrals in my hometown, leaving pieces of myself on the college campus I adored; pieces of myself that would never be mine again.
View of the sunset from my dorm room bed.
My apartment was five minutes away from a world-renowned dysautonomia clinic. I was a young, debilitated college student desperate for medical treatment, unable to walk to classes because my heart rate got so high. My internist in town did all that he could, sending letters to the clinic, his nurses calling every morning, but the clinic simply couldn’t squeeze me into their packed, rigid schedule. They were booked six months out, into the next year. And how would squeezing me in be fair to other patients who had waited the long six months for help? The demand for autonomic testing in America is so high, dysautonomia clinics across the country are swamped. There are not enough doctors or time in the day to see all the people who need to be seen, or to help all of the people who need to be helped. I was a person of many who needed to see an autonomic specialist, who was living with a quality of life similar to patients with congestive heart failure. The reality was, I could no longer take care of myself, could no longer cook or shower, and my illness was consuming me with each passing day. I withdrew from college, said my goodbye to my family of friends, and then I went home, and I waited. Help from doctors was months away.
The waiting was the hardest part. I watched my world become smaller and smaller, independence and freedom swirling down the drain as my mother washed my hair. Simple walks around the neighborhood became increasingly more depleting, and life became an activity I watched through a downstairs window. The sun would rise and fall, the birds would come and go. The neighbors’s cars pulled in and out of driveways, going places, doing things. I was no longer a participant in the world; all I could do was observe.
Although my body kept me breathing and woke me up for each new day, I wasn’t living, I was surviving. I waited for doctor appointments as my friends carried on at college, sending their love while their lives continued, essentially unchanged. They would continue to grow in school, continue to learn and deepen relationships, continue to live the college life that was swiftly taken from me. These were the days where movies were a life raft, floating me to the next hour; if it weren’t for the television, I would’ve drowned in my fatigue.
After two months of being out of school, I finally met the right doctor. It had been two months of meaningless tv shows, two months of writing angry entries in my journal, two months of avoiding music and reminders of the beloved life I lost. Two months of sitting at the park, two months of lying on the couch with a heating pad, two months of hardly telling anyone where I was, that I had left school, that I was back home and depressed. By the time I finally saw the right doctor, it would be another month until I’d be able to be tested. A month of more television, a month of more angry journal entries, a month of feeling increasingly more trapped inside my home, inside my body, inside a reality that I never imagined would happen to me. It was a reality I wanted a gift receipt for, some way to be refunded for the wild, energetic, young adult years I lost.
Journal entry from 12/13/2019.
In mid-December of 2019, after a grueling tilt table test preceded by three various autonomic function assessments, I was finally diagnosed with a condition called Postural Orthostatic Tachycardia Syndrome. It’s typically referred to as POTS, and it was no longer just a group of cookware or a sickness that only happened to someone else; it was now the name of the health condition that had assigned itself to me. This form of dysautonomia makes it difficult to walk or stand, as the dysfunctional nervous system struggles to regulate heart rate and blood pressure when the body is upright. Although it is a benign condition, it can be incredibly debilitating, triggered by simple things such as a hot shower, a warm day, even from eating a moderate or large sized meal. A diagnosis opened up a whole new world for me, one I still didn’t particularly want to be a part of, but a world that had access to help; I walked out of that doctor’s office with pamphlets, referrals to a physical therapy clinic and a dietician, and now I had a relationship with a doctor who validated and understood my condition. From the very beginning, I never wanted a diagnosis, but that day, the year-old ball of angst that had cemented in my gut dissipated because finally, I had answers.
The treatment for POTS takes an individualized approach, as no two patients are the same. This syndrome can have varying degrees of debilitation, along with a vast assortment of symptoms and causes, so naturally, treatment varies per the individual. However, care for POTS often consists of increasing salt and fluid intake, modified, consistent exercise programs, various lifestyle changes, and a mixture of medications to help lower heart rate and raise blood pressure (typical medications are beta-blockers, vasoconstrictors, stimulants, and more). There is no cure for POTS so treatment is aimed at managing symptoms, and prognosis typically depends on the age of the patient and the cause of the disease. Because my doctor believes I contracted POTS as a result of a viral illness, my prognosis looks quite good, and it’s predicted I should see relief in a few years’ time.
Because so many people have not heard of POTS (including many doctors…yikes!), they assume my condition is rare and that my experience with a viral illness does not happen to people often. I wish this was the case. I wish there weren’t so many people in the world that understood my tale of pain and the struggle of POTS so well. It is estimated up to three million people in America alone are suffering from this disease, though it is likely more, considering how often the condition is misdiagnosed and how difficult it is to get access to the correct doctors and medical testing. While not all three million of these people developed POTS as a post-viral condition (there are several other causes such as EDS, autoimmune conditions, and pregnancy to name a few), that is a staggering amount of people living with this chronic disease. I just came down with a virus, the same way you’d catch a cold. It wasn’t a rare, freak event. It can happen to anybody, and it happened to me.
One viral illness. That’s all it took to transform my life. These days, I struggle to process the lasting impact of a single infection. The fact that it’s led me to over seven doctors in the span of a year. The way it has shifted, stalled, and shattered my life, my ideal college career, and plans I had for the future. Often, I think back to stomach bugs in my childhood and the typical colds and rounds of flu I’ve battled throughout my adolescent years, baffled at the way I was able to recover from them so quickly, unscarred and whole again within the course of a week. Back at school the next week. Now I live a life where time moves slow and fatigue comes fast and standing in the shower is a victory to be celebrated. Now I am faced with the daunting task of rebuilding an entire life, starting from the very beginning: teaching my body how to walk again.
The medical condition I have makes it hard to stand or walk for moderate to long periods of time. When I do, my blood pressure drops, my heart begins to race, and my nervous system begins its fight against gravity, battling the force that always wants to pull me down. But despite it all, I get up. I take my medicine, I swallow my salt tablets, I go to physical therapy. Despite it all, I’m still standing, even though there were many days in this health journey I was convinced I’d never see the end of. The ones that felt like even when the clock struck midnight, they would find a way to go on forever. I’m still standing, even when my body doesn’t want to; when my muscles ache, my head is foggy, and my dysfunctional nervous system would rather I lie in bed all day. Despite it all, I’m still standing. Maybe not better than I ever did, like the famous Elton John song goes, but standing, nevertheless.
Thank you to Dysautonomia International for the informative pictures, expending consistent effort to raise awareness for POTS and other forms of dysautonomia, and the resources it provides for those affected.
