Last week, I had an annual check up with my internist. She reviewed my yearly blood work before conducting a brief physical, doing what primary care physicians typically do during regular, scheduled check-ups. In retrospect, there was nothing to be nervous about, as the appointment was just for checking in, nothing new. But three hours beforehand, I felt that familiar fear creep out of hiding, the one that’s painfully festered throughout these past two years.
I seem to remember almost enjoying going to the doctor’s as a child. With their impressive supply of stickers, it was kind of hard not to. But I think it was because there was some element of it all that always felt like a field trip of sorts. I was never a regular there, at least not yet; I was simply a visitor who showed up once, maybe twice a year, mostly to confirm that I was still completely healthy.
In those days, there was no ailment I brought in that the doctor couldn’t quickly fix or understand. My pediatrician was for strep throat and flu shots, and I hadn’t yet traveled into the realm of Western medicine that isn’t designed for complicated chronic issues. In those days, I hadn’t yet developed finger tremors or muscle twitches that confused and puzzled my knowledgable doctors. I hadn’t yet felt the terror of staring down the long, dark road towards a diagnosis.
I miss that trust I used to have in my body, the trust that I’d swiftly recover from whatever came my way. I miss having ailments that could be fixed with a simple round of antibiotics.
These days, the doctor’s office fills me with dread. I guess that’s just what happens when you’ve endured enough medical testing. Oftentimes, I’ll try to reason my way out of the panic, telling myself things are better now, that I’ve survived the hardest part. Even so, my logic typically fails me; the memories are still too strong.
By now, I’ve learned to stop fighting against these feelings. With the help of my therapist, I’ve practiced letting them come and letting them go, giving them the space they need to arrive, as they inevitably will. It’s another exercise of surrender, a releasing of the illusion more commonly known as “control.”
On the car ride there, I felt the awaited dread rise within me. I tried to tune it out with my calm meditation music, but the two clashed in a minor key; the dissonance was striking. The dread felt thick and aggressive, like waves from a raging sea, and the salty water filled up my car, all the way to the brim. With shaky hands and a shaky breath, I tried my hardest not to drown.
When I arrived, I took a deep breath before stepping out of my car. I straightened my denim jacket as if it were my armor. Alone and scarcely armed, I walked through the automatic doors.
I arrived at the office, found a chair, filled out forms. Before I knew it, I was standing on a scale, then sitting in the exam room with a blood pressure cuff wrapped tightly around my arm.
It wasn’t long before my internist walked into the room, carrying a warmth that neutralized some of the chill from that afternoon. After a round of small talk, she reviewed my blood work and declared I’m essentially “a healthy young woman, with POTS”. My shoulders relaxed a centimeter.
She stood up, began the physical exam, but not before commenting on my reusable liter water bottle–a staple accessory for anyone with POTS. “I never leave the house without it,” I joked. “You’re doing everything right,” she responded, with kindness and care.
Throughout the past year, I’ve learned how to take good care of myself, but still, that sentence filled me with relief. The invisible mountain of bricks on my back disintegrated, drifting to the floor like a cloud of dust. I took a deep breath, mostly because she told me to, in order to check my lung function, but it was partly involuntary too; for the first time in that examination room, I could breathe again.
My internist released me from the appointment with the remark, “no torture for you today.” She was referring to blood work and other medical testing, and though it was a joke, it rang true. With the feeling I’ve paid, if not surpassed, my medical dues, I collected my bag and gigantic water bottle. I let the door of the exam room shut swiftly behind me.
Walking out of that appointment, I nearly strutted down the hallway. I felt strong and resilient, as if I’d just slayed a thousand dragons. I think, in a way, I did. With shoulders squared and a head held high, I relished in my quiet victory.
Climbing back into my car, I took a moment to regroup. Even on a good day, that office is disorienting, with or without new covid-19 protocols.
My internist’s office is the place where a doctor first spoke the name “POTS” to me. It’s the place I’ve returned to again and again throughout this journey, each appointment a major checkpoint along the way. My internist is also the doctor who coordinates all of my care, and though this seems like it would provide a sense of structure and stability, in reality, I’ve found it does the opposite.
Because POTS affects my nervous system and because the nervous system controls, well, pretty much everything, my collective symptoms of heart palpitations, dizziness, GI distress, and more, each require specialists of their own. It takes a village to treat POTS, from neurologists to cardiologists to gastroenterologists, allergists, and more, and my internist is typically the one writing the referrals, shipping me off to my many specialists. This contributes to a sense of disorienting, fragmented care, and I now see seven specialists to help manage my condition (not including my PTs, my therapist, and my dietician.)
That office holds so many different versions of myself, and each time I return, it’s like bumping into all of them at once. They fill the stuffy waiting room, taking up space in the chairs next to me. It’s almost as if they’re all frozen in time, suspended in their silent suffering. I want to reach out to them, lock eyes, hold their hand.
There’s the 18 year old who was struggling to recover from mono; the tired musical theatre performer wondering why she’s tired all the time; the scared college student that sensed something was wrong; the exasperated full-time patient who was desperate for a diagnosis; there’s the freshly diagnosed college drop-out, fumbling around in the dark. And then there was me: the one who’s found her footing, who made it to 2021 somehow.
It’s a lot to walk into, and it’s a lot to leave behind.
I wish I could tell each of those versions of myself that I have finally made it to the “maintenance stage.” That all the medical testing does in fact end, that she will find the answers she’s fighting for and learn to live in the unlivable. I wanted them to know there’s a part of the story where it really does all get better, that I’m in it now, the falling action, living in an ending she dreamed of but didn’t know how to reach.
In the driver’s seat, I attempted to collect my scattered thoughts, trying to settle into my new reality: the one where not all doctor’s appointments are traumatizing.
Putting the car in reverse, I drove to a nearby park where I celebrated with a short walk and sitting meditation. It’s a treat because I’m well enough to do this now, but also because anything is a celebration if you label it as one. I’m learning there’s a lot of power in that. Celebration is a powerful thing.
As I pulled into the parking lot, there was a boulder engraved with the name of the park. The sign read, “Champion Park.” I smiled to myself, chuckling a little, because it could not have been more fitting.
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.
With it being the beginning of Dysautonomia awareness month and having had a pretty rough flare this weekend, POTS has been on my mind a lot lately. (Or at least more than usual, I should say.)
Because of this, I found myself knee-deep in a big, fat, snotty sob session this afternoon. It was as if the pitch-black rain cloud that’s been steadily building overhead parted, dropping bucketloads of rainfall on parched, crunchy land. It was the kind of cry that feels like a workout, that drains you but leaves you feeling lighter. Emptier too.
I cried because as much as I preach about hope, I still can’t believe this happened to me.
I cried because as proud as I am of my resilience, I’m exhausted of hearing the words “you are so strong”.
I cried because POTS is a lot to manage and tears are just the inevitable outcome of living with a disabling, chronic condition.
I cried because I don’t know what it’s like to go to college without ER visits and doctor’s appointments and dizzily wandering through hospital corridors alone.
I cried because some people get mono and get over it. Because they’re not on their third year of chronic illness, trudging through thick mud and grief on the twisty road towards recovery.
I cried because chronic illness is too much to deal with, and it’s lonely and isolating and even after all this time, scary.
I cried because if it weren’t for POTS, I would still be a music student, learning vocal scales for school, growing, refining, and polishing my craft.
I cried because progress is still so hard, even when there are people who congratulate and applaud you.
I cried because sometimes moving forward feels like a curse, because I have to bring all of this brokenness with me–this dysfunctional body that’s been through hell with its muscle twitches and tremors and dizziness and fatigue.
I cried because even though I’m doing better, recovery is still so tough.
I cried because on a bad day like today, POTS feels simply impossible to live with.
Today I also cried for everyone else who knows the pain of POTS. Who knows its physical, emotional, and spiritual toll, who’s participating in Dysautonomia awareness month right alongside me.
I cried for everyone who came down with one little virus and spent years of their life trying to recover.
I cried for everyone who’s left jobs, careers, schools and universities in order to prioritize their health.
I cried for everyone who’s sacrificed dreams, plans, and social events in order to tend to and cope with their illness.
I cried for everyone who’s ever had to choose between seeing a friend and taking a shower, who’s suffered through flares in dark rooms, alone.
Mostly, I cried for everyone who knows how much one single virus can change a life forever.
I don’t share this blog post as a way of seeking attention or praise. I share it because in order to truly raise awareness about a misunderstood disease, I must first be transparent about the reality millions of people face around the globe.
Chronic illness ain’t easy. It’s about as fun as it sounds. And I am a big believer in the power of positivity as well as the steel-like strength of unbreakable hope, but that doesn’t change the fact that chronic illness is a beast. A gruesome monster I, along with millions of others, never asked to meet yet live with day after day after day after day.
If you’ve ever battled the bullies disguised as disease, know that I understand. That I rage and cry with you, and for you.
I know how much of a warrior you are, and let me be frank–that’s not a term I use lightly.
Yesterday was September 24th. I woke up, took my meds, ate breakfast and started on school work. It was a typical, ordinary day for me, filled with online classes, PT exercises, and journaling in my spare time. I’ve gotten used to both working at home and my dysfunctional body, and I’m settling into the “new normal” I once swore I would never obtain.
But this time last year, September 24th was anything but ordinary. It was a hard day that was chillingly easy, the day I moved out of my college apartment and officially withdrew from the university of my dreams.
I look back on this day with a stabbing pain inside my heart. A year ago, I was riding in a car packed to the brim with my fragmented life. Suitcases were arranged like Tetris in the trunk, stuffed with outfits I’d never wear for memories I’d never make, along with college spirit gear I suddenly had no use for. I was headed towards home, where I’d wait on referrals that were months away, wondering what would become of me while I wandered into unchartered darkness.
A year ago, my mother was overseas when I called, when I sputtered out the words, “met with my advisor”, “decided it’s best”, and “I can’t do this anymore”. I felt the words crawl through the phone, heard them plop out the other end, rippling across the vast Atlantic Ocean. Instead of catching a flight to Nice as planned, she booked a last-minute trip to Nashville instead, cutting her well-needed vacation short in order to help her debilitated daughter move out. She should’ve been walking along pebbled beaches in Southern France, catching up with longtime friends, but instead bore the brunt work of loading up my CR-V.
A year ago, my roommates surprised me with a dinner party. It was really a goodbye party, the only one I’ve ever had, and maybe I’m biased but it was also the best, filled with joy and laughter amidst our heavy sorrow. It hadn’t set in quite yet, that I would really be leaving–for now, for forever, for who knew how long. Up until this point, I was too focused on survival, how to make it to the next moment, to the step, to the next seemingly impossible breath.
Picture from said dinner party. 503 girls forever <3
A year ago, I turned in my keys to the RA. For five weeks, that little dorm room was mine, filled with symptoms and sleep and phone calls to my mother. I watched as the RA quickly closed the door, feeling the rattle of the doorframe reverberate in my bones. She took the keys, turning the lock, and as she did, I heard a small knocking, coming from a piece of myself stuck behind that door forever.
A year ago, I stood in the kitchen of that apartment, fidgeting, stalling, doing anything to stretch out time. My roommates and I looked at each other from across the table, daring one another to be the person who said it first–that one word, those two syllables. “Goodbye”. “Good-bye”. If it weren’t for my condition, I could’ve stood there until the end of time, suspended in the last moment of my old life.
A year ago, I left a university I adored. I abandoned plans, hopes, dreams, versions of myself I never got to become. The frightening truth is how easy it was, how easy it is to leave when you’re left with no other choice. With a sturdy composure, I gave a final wave to my roommates, shutting the car door, saying softly to my mother, “maybe this is what it takes for me to finally get better”.
My roommates saw someone brave, calm, and collected that day, saw their friend facing the unimaginable with an emotional armor made of steel. But the truth is, that armor was fleeting; when the spotlight turned off and the audience went home, my epic costume unraveled, leaving me bare, naked, and entirely defenseless.
These days, I’m so focused on moving forward with my recovery that the act of looking back feels unbearable and draining. My healing still seems fragile, as if one wrong step will shatter all the precious progress I’ve made. I worry that if I’m not careful and wander too far into the past, I’ll get lost there forever, reverting back into my crippled state, becoming frozen in moments I worked so hard to get out of.
It’s been a year since that day and so much has happened since then. I feel like a different person now; stronger, sturdier, more sane from the rest that was long overdue. But in my weakest moments, I transport right back into that apartment, where the sorrow and pain were acute and so raw, where I’m still the girl who’s terrified of what her life has become.
I don’t have any words for that version of myself. No advice, words of wisdom, or genuine encouragement. If I could, all I would do is wrap my arms around her; tightly, like a promise, never letting her go.
Healing is harder than I thought it would be. Don’t get me wrong, when I first received my POTS diagnosis, I understood I was at the beginning of a long, windy road to recovery, one filled with bumps and detours and a tedious chain of obstacles. I knew this process would take time, patience, and an unspeakable amount of grit, that it would be far from easy and incredibly grueling. But I guess I unconsciously assumed that once I began feeling physically better, the rest of my troubles would wither away. I assumed that my biggest struggles were solely physical, so once my health improved, I’d be ‘all better again’. Lately, I am learning, this couldn’t be farther from the truth.
Up until a few weeks ago, I held a narrow notion of healing, one that revolved around a peace and mending of the body and mind, characterized by a centeredness and calmness while involving a hefty amount of therapy, meditation, and organic green juice. And while there is some truth to all of this, I’m learning that healing looks and feels different for each individual person, that it’s just as psychological as it is physical. Healing can be a long, snotty cry in your room, the act of doing something you’re scared to do, or giving yourself permission to feel emotions you’ve ignored or pushed away. Healing can be spending time with friends, feeling the warm breeze against your skin, or it can be the making of hard sacrifices, putting your health first yet again for what feels like the millionth time.
There is a part of me that was surprised to find that the process of healing is incredibly messy. In fact, for a while, I assumed I must be doing it wrong, as if there is any “right” or universal way to heal. I approached my recovery the same way I approach life, with an impulsive need to embody perfection. I wanted my uphill battle to be brisk and linear, free of any detours, slips of the foot, delays or distractions. I wanted my worst days to live behind me, to stay behind me and for good, and I wanted to catapult myself into wholeness and good health. When I first got diagnosed that warm December day, I wished to slingshot myself froward, to find some magical remote that would fast forward me to the good part, to the part where I’m all better again.
A gif of an Angry Bird being launched by a slingshot.
It’s easy to be mislead from the reality of healing when the process is sounded by words like “journey” and “inner peace” (not to mention the fact that these terms are almost always used alongside sparkle, heart, and star emojis). These misconceptions are reinforced when outsiders only see half of the picture, when insight comes in the form of staged photos of victories and celebrations and not the day in day out trudge that encapsulates chronic illness. Let this be your daily reminder that there’s always more to someone’s story than the snapshot you see. In the words of my favorite quote, “You never know what people have to go home to. Be kind.”
Over the recent months, I’ve learned that even as my health improves, feeling physically better is only an aspect of the healing process. The damage chronic illness does to the psyche runs deep, and it takes time to process the loss, events, and emotions that come along with getting sick. When I was at my worst, I didn’t even have the energy to form opinions on what I was experiencing (other than “this f*@*$&! sucks”…) because I was too busy trying to stay strong and salvage the scraps that were my life. Now that I’m doing better, all of these unfelt emotions are waiting for me, as if I’ve returned from a disastrous vacation to find my home infested with roaches.
As complicated as these unprocessed emotions can be, at the worst of it, my illness had a way of simplifying my life; when my energy was scarce, my priorities were clear. Meanwhile, my symptoms acted as a form of guidance, managing my schedule and dictating my days. Feeling tired? Rest. In pain? Lie down. Dizzy and nauseous? Head to the couch. The more constant these symptoms became, the more I got used to feeling that way. Being unwell became my new normal, and at some points, it was simply expected. Now that I have more energy, it’s almost an unusual sensation as for the past three years of my young adult life, I’ve been crippled by chronic fatigue. At times, it now feels like I’m traveling without a roadmap, or that I’ve acquired a lucky lottery ticket but don’t want to spend my loot too soon.
A picture of Homer Simpson, carrying the roadmap I wish I had.
The switch towards learning to live with my symptoms was, in a way, just as hard as being succumbed to them. Instead of surrendering, I had to pick up my sword and muster the courage to fight again. Integrating myself back into “normal” life is definitely harder than I want it to be, and it feels as if I’m walking into an unbearably bright summer day after spending sixth months in a cold, dark movie theatre. It’s reasonable to assume my eyes need some time to adjust to the light. After all, I’ve spent quite a bit of time fumbling around in the darkness.
The more energy that has returned and the less intense my symptoms become, the more possibilities there are on how to spend my days. With this newfound possibility comes a plethora of unknowns, and sometimes all the uncertainty can be frankly overwhelming. What will I do next with my life? Am I spending this energy wisely? Productively? As fully as I can? Will I do something meaningful with my improved health? Make something purposeful of this pain? The pressure to know these answers is heavy, and sometimes I struggle under the weight. The more progress I see in my recovery, the more pressure I put on myself to have my life all figured out.
Healing is hard. It’s harder than I thought it would be. It’s harder than I wanted it to be, and sometimes it’s harder than what I think I can manage. The good news is, I’ve made it through all my worst days so far (with an impeccable track record, may I add…). The bad news is, I’ve still got a ways to go with discomfort, difficulties, and unprocessed grief waving at me from a distance. I’m bound to catch up with them soon, and sometimes that tempts me to swerve off the recovery road, driving far away from the inevitable without ever once looking back. But other times like today, where I had a lovely morning at the pool, floating in the water and looking up at a clear blue sky, I think to myself “Look at how far you’ve come” feeling oh so lucky to be here, floating and alive.
There’s no denying that healing is hard, hard work. But some days, it’s beautiful too.
I’ve spent the past two days on the couch. Not by choice, but because of some testing one of my doctors ordered a few months back and I’ve had to come off my medication for it (which I’ve been absolutely dreading, hence the procrastination). Coming off medication is as much of a mental challenge as it is a physical struggle, and it’s definitely been a cruel blow to the bubble of peace my meds have graciously provided for me over the recent months. If anything, this testing has shown me the amount of freedom my meds give me, and in my hazy, symptomatic state, I’m convinced I will never take them for granted again.
I figured what better time to finally complete this testing than during a pandemic with loads to watch on my Netflix cue, but in all transparency, there’s never a good time to voluntarily subject to feeling unwell. I’ve done a lot of medical testing these past few years. Labs, scans, EEGs, autonomic functionality, the list goes on. I’ve spent a lot of this time, too much of this time really, feeling everything far from well, so I do everything in my power to prevent flares and symptoms, and more testing than what’s absolutely necessary. But sometimes these situations are unavoidable. Sometimes there’s testing that really must be done, so my only option is to hold on tight and brave the looming, incoming waves. Like I mentioned above, so much of chronic illness is a mental challenge as much as it is a physical struggle. POTS has certainly been the mental battle of a lifetime.
On a weirder note, my mom and dad drove downtown yesterday to pick up another sterile lab jug for me to urinate in. That’s true love (and also really gross, sorry!) and I don’t know how I’d survive POTS without them, frankly. Their love is a source of great strength for me, a deep reservoir I tap into often.
Coming off my meds for testing has been humbling to say the least, and I’ve gained valuble perspective on how much progress I’ve made in recent months. Last week, I went on a short walk in 90 degree Texas heat and was averaging around 4000 steps a day. I’ve been able to go swimming, walk through the grocery store (masked, of course), and I’ve begun an online class at a local community college, which has been enjoyable to give energy to. My medication regimen and physical therapy program are helping me claim my life back, but it’s a slow, lengthy marathon that happens gradually overtime. This type of progress can be harder to notice on a typical, day-to-day basis, so sometimes situations that put a jolt to my system (like this testing and weekend on the couch) remind me just how much better I am feeling these days. What a major victory!
But yesterday I didn’t feel quite so victorious. Yesterday it was a struggle just to walk to the bathroom. This can be the reality of chronic illness, the way it flows in and out of your life like an unwanted guest, ignoring rent payments and courteous roommate formality. It often loiters in the background before jumping out in fullforce, seizing days at a time and stealing pieces of you in its brisk, crippling stride. It’s a cruel, constant tug-of-war battle that I never agreed to play, but here I am holding on, grasping the weathered rope until my boney knuckles turn white.
I laid on this couch all day as people moved around me, going places, doing things. They had an actual day. They were free to roam wherever they chose, while I stayed still, cemented to this couch. I’ve gotten so used to this stillness, so used to the sitting out, that this worn out couch and I are almost buddies, a partnered, package deal. I kept wondering when I bumped paths with the world-renowned Cleopatra, wondering what kind of curse I encountered that damned me to this time of statue. Somewhere deep within me, I could hear my spirit whimper; held hostage within this body, it was chained entirely against my will.
That used to be my every day life for months and what a sad thought that is. Yesterday, I passed through that flare as a visitor, knowing no matter how bad it may get, I could resume my medications tomorrow. But that did little to calm the rattling of my bones, scarred and shaken from the days they have lived through. I truly don’t know how I got through that time, no matter how much I reflect or ponder. During those early, pre-diagnosis days, I don’t quite know what pulled me through the next moment, to the next morning, to the next month. Maybe it was my parents or that tiny glimmer of hope, but more often than not, my “strength” people commend me about seemed gone in all capacity. At the lowest points, on the darkest days, strength was nowhere to be found. Strength, I have learned, is more of a byproduct from pain, a callous on the soul that’s located deep within.
Even there, in that flare, there was progress. Immense progress. There was fear but there was knowledge, a trust and comfort in what I’ve learned about my body, about this disease, about how to get through hard days like those. It’s Monday, I am medicated, and I am already feeling better. But this morning I woke to a sweet surprise before I even swallowed my pills. The worst was over, the day was new, and I had survived the gnarly waves.
The steam was blinding. I inhaled it like it was cigarette smoke, inviting the vapor into my lungs and feeling it relax every tense muscle, one by one. The warm mist was like nicotine, soothing and addictive, and I came back every night to get my fix, eager and greedy. I was hooked, I was obsessed, I was completely dependent on a hot shower to keep me sane.
A hot shower used to be my daily ritual, my nightcap and melatonin, but more than anything, it was my happy place; I adored hot showers. I loved the clean feeling I’d wear for the remainder of the night, the soft smell of strawberry soap diffusing sweetly from my skin. I loved the warmth that radiated from my body for hours, feeling snug and cozy and tenderly taken care of. I loved everything the shower stood for: relaxation, serenity, peace. My nightly hot showers were dear to me, a privilege I understood to be a joy. A privilege that, due to a chronic medical condition, was swiped from my grasp over the course of a year.
I used to always say “there’s nothing a hot shower can’t fix”. And for a long time, I believed this to be true. It could sooth heartbreak, rejection, bad moods and bad days. It could ease sore muscles, clear out sinuses, effortlessly untangling twisted thoughts and feelings. But when I was diagnosed with a debilitating form of dysautonomia last year, my beloved hot showers couldn’t make it better. In fact, they only made it worse.
In December of 2019, a grueling tilt table test confirmed I was suffering from Postural Orthostatic Tachycardia Syndrome. It’s typically referred to as POTS, partly because it’s a mouthful and partly because Big Long Doctor Words tend to freak people out. POTS is a benign condition, but don’t let the quirky acronym fool you; this disease derailed my life. I went from performing in three hour musical performances and juggling college courses with rehearsals to struggling to wash my hair or walk up a flight of stairs. This type of dysautonomia is typically characterized by racing heart rate and lightheadedness when the body is upright, due to a malfunction of the nervous system that poorly regulates blood pressure and heart rate. This makes walking or standing for moderate to long periods of time difficult and exhausting, and although this condition is not life-threatening, its debilitating symptoms are certainly life-altering.
POTS is usually managed by increased salt and fluid intake, medications, and a modified, consistent exercise program, but it can be triggered by many different things. Warm rooms, hot days, standing up too quickly or lying down for too long. POTS can be triggered by dehydration, alcohol and hormonal changes, even from eating a moderate to large sized meal or particular foods. It doesn’t take much to send my heart racing, but heat is a consistent trigger for me. Within fifteen to twenty minutes of sitting in the sun, I begin to get tremors in my fingers, my heart rate increases, and I start to feel woozy and lightheaded if I try to walk around. This is because heat is a vasodilator, so the warmth causes my blood vessels to widen, encouraging blood to pool in my lower extremities and forcing my heart to work harder to pump blood to the rest of my body. Because of this, I’ve had to say goodbye to hot yoga, long days spent in the sun, tanning and sunbathing. I’ve said goodbye to saunas and hot tubs, most outdoor summer activities, and last but certainly not least, my beloved hot showers. Stepping into the shower at the end of a long day quickly went from a cherished stress-reliever and a therapeutic experience to a whirlwind of symptoms that sends me stumbling to the floor.
A picture of me lying down after my shower, taken in May. I still do this often.
Within two minutes of standing in a hot shower, my heart begins to pound, my fingers start to shake, I struggle to breathe, and my feet turn purple. Afterwards, I’ll feel drained of all energy, dizzy and fatigued, and become glued to the couch for the remainder of the day. It still baffles me the way a simple activity can be such a challenge, and I’d be lying if I said I didn’t have a few colorful words waiting for whoever’s up top, in charge of the universe. But because of my stubborn heat intolerance, and because I’d rather not use all my energy for the day on a simple shower, I’ve been left with no choice: begrudgingly, I’ve adopted shorter, cooler showers and baths, sitting down in the shower in an attempt to avoid symptoms. Showers are now a “get in, get out” operation, and there’s no longer time or tolerance for things I used to cherish, like singing in the shower. As a singer and music-lover for as long as I can remember, this has been one of the hardest joys to lose. Frankly, I’d give anything to belt showtunes in the shower again.
Because of POTS, I went from singing in the shower to shivering in the shower. I went from running and dancing and singing on stage to feeling completely wiped out from simply washing my hair. It’s been five months now of this new bathing routine, five months of temptation to turn the shower knob to the left, to claim back the heat and wash like I used to. Slowly, I’ve adjusted and gotten used to the chilly water, but there’s not a day where I don’t miss when showers were no big deal. When I could hop in quickly to start my day, or take my time and unwind for the night. I miss when they didn’t have to be planned strategically with my medication regimen, aching to go back to the days when I had no idea what a beta-blocker did. I miss when water temperatures were out of preference and shower lengths were out of pleasure, when my bathroom was a private karaoke bar instead of a harsh, challenging terrain tackled day after day. There’s no denying my new shower routine is by far more eco-friendly, but I miss the privilege of a long, hot shower; a privilege that used to be mine.
These days, I can’t go outside without an ice pack or a fan. I can’t stand in the shower, take a hot bath, enjoy a long day at the beach, or sunbathe in the summer. Sometimes I feel overwhelmed by all the constant “can’t’s”. I get sick of the “used to’s”, of the “not right now’s”, of the “maybe’s”, and the “one day’s”. I feel like I’ve been waiting forever for the “one day’s”. For the day I’ll be able to stand in the shower again, belting and riffing to my heart’s desire. For the day I’ll run a mile and not think twice about it. For the day I won’t have to worry about hot days and ice packs and whether or not a lovely afternoon outdoors will spark a nightmare of symptoms. I don’t know if I’ll ever be able to truly express the strain of living restricted by your body, spending day after day dictated by an illness. I hope one day I’ll finally be free, and there is a part of me that’s brave enough to believe it, but sometimes “one day” feels perpetually far away.
Pictures of me and my gear: an ice pack, personal fan, cooling cloth, electrolyte drink and an ice cold smoothie. I don’t use all of these tools every time I go outside, but the ice pack, fan, and electrolyte drink are must haves whenever it’s time to brace the summer heat.
But within the past few weeks, something beautiful has happened. I’ve noticed myself singing again, mindlessly, as I move about my house. A few nights ago, as I grabbed my pajamas and drew up a cool bath, I noticed myself humming an old favorite Taylor Swift song, something I haven’t done in quite some time. I stopped for a second, realizing it’s been over a year since I’ve had the energy to do this, to hum and sing like the music was a part of me, an extension of my spirit. To feel comfortable enough walking around my house, with fewer symptoms and much more ease, to express peace and contentment as music into the air. These days, thanks to physical therapy and my medication regimen, I’ve been able to move through the world almost how I used to, with lyrics and melodies and catchy tunes pouring out of me. For a moment I was struck by this facet of myself, the one that has energy for singing, for creativity and artistic expression, was here again, and it had defied the odds and risen from the wreckage of a life I loved and lost. It was a simple moment shared with no one but me, yet instantly I felt unified, whole, like all the broken parts of me were mending together. Like my emptiness was beginning to fill, like all the love I thought I lost was finally coming back to me.
Sure, it’s still not singing in the shower, but I’d say it’s better than not singing at all.
It is a typical Tuesday morning, and my mother is knocking on my bedroom door. She comes bearing breakfast, carrying a vibrant red tray that holds a plate of fried egg and potatoes, a small, ripe orange, salt tablets and an electrolyte-filled water bottle. She’s wearing a smile and summons the sunshine, opening up my blinds to let the light in. “Good morning” she says, delivering a kiss to my head. She leaves me to wake up, and heads back downstairs.
I nibble on the kind food, waiting for my medicine to kick in before I can rush to the bathroom. I am grateful for her generous labor in the kitchen, aware of how much thought, time, and energy she put into making this food, but I also feel angry that I couldn’t walk downstairs and cook breakfast myself. I juggle this gratitude and resentment as I lazily circle my feet, stimulating blood flow and nudging my tired, cranky body to begin this new day.
My mornings weren’t always so slow, and it didn’t always take an average of two and a half hours to get my body functioning, but everything changed after being diagnosed with a chronic, disabling health condition last December. Vaguely, I can remember the days where I’d spring out of bed, throw on my sneakers, and head out for a two mile run before school. Those mornings seem like ages ago, like memories that belong to someone else except they don’t. They’re still mine. I have to remind myself of this often.
It’ll be at least another hour of circling my feet and waiting, an hour of getting up just to sit back down all the while chugging oceans and oceans of water. I’ve gotten pretty good at filling the minutes, taking up journaling, meditation, and games of Words With Friends, but some days I can’t help but loathe my demanding illness and the way it steals time from me, daily. Some days I’d trade the extra hour in bed in a heartbeat for those dingy sneakers and early morning runs. Some days I’m tempted to scream, “Screw it!” to the salt tablets and the water and the waiting, throwing on a pair of workout clothes and running out the front door. But I know I wouldn’t make it very far. I know with my condition and these early hours, I’d hardly make it to the living room, let alone down the street. On these days especially, my body feels like a cage.
Picture of my old running shoes.
It was December of 2019 when I was officially diagnosed with a common yet scarcely known medical condition. After over a year of debilitating fatigue, dizziness, heart palpitations, and other miscellaneous symptoms, my doctor confirmed I was suffering from a form of dysautonomia called Postural Orthostatic Tachycardia Syndrome (also known as POTS). This condition affects my heart rate and blood pressure whenever my body is upright, making it difficult to walk or stand for long periods of time. Things like dehydration, heat, or extended periods of inactivity can intensify my symptoms, which is why mornings can be such a particular challenge.
With POTS, every morning is a battle. After lying horizontal for eight hours, it takes a lot of time, salt, and fluid for my body to tolerate being vertical again. A good, long night of sleep means waking up dehydrated, and waking up dehydrated means it’s even harder for my stubborn, misbehaving nervous system to regulate my heart rate and blood pressure. On good days, my body will wake up within the hour. On bad days, it can take up to five hours before I am finally functioning. On flare days, I never reach “functioning” at all. It’s been almost a year and a half of these fluctuant mornings, and waking up into a flare day is still an infuriating letdown.
On this typical Tuesday, I have physical therapy in the late morning. After all my tedious preparations, my mom and I climb into my car, her in the driver’s seat and me riding shotgun; a switch that is now routine. I sneak a quick glance at my mother sitting in what used to be my seat and feel my heart twinge with longing. As a twenty year old, I miss the freedom of sitting behind the wheel, and the independence that comes with a license and a set of wheels. I miss coasting down wide Texas roads, belting all my favorite songs, and mindlessly heading wherever I needed to be headed. These days, I’m scarcely headed anywhere, save physical therapy and my favorite local burger joint, and even before the entire nation locked down for a raging pandemic, I’ve been essentially homebound, my life revolving around physical therapy, doctor’s appointments, and sitting in the park. How did this happen? I wonder yet again. When did I become so boring and sad and crippled, and how do I make it stop? Turning my head, I look out the window, knowing the unchanged answer to these persistent questions. Still, I can’t help wishing it was different.
Picture of me after physical therapy with lunch from my favorite local burger joint, P. Terry’s; My family likes to call this “PT after PT”.
I stroll up to the front desk, signing in for my session and beginning my usual small talk with the charismatic receptionist. “What did you do this weekend?” she asks, innocently and unassuming. Considering how it rarely varies, this question shouldn’t be so hard, but I find myself scrambling to think of anything significant. “Uh, honestly, I can’t remember. Just a typical weekend I guess.” I reply, paired with a basic shrug. My weekends are quiet now, given that I’m still quite physically limited and because of this they blur together, usually consisting of the following three things: reading, writing, and completing my at-home physical therapy exercises. It’s a routine that still feels novel and odd, another aspect of my new life I’ve yet to settle into, and I often find myself embarrassed of its stark simplicity; it’s painfully uncomfortable to admit how physically limited I currently am.
My illness has changed many things about me, including what I can and can’t do, and this new life I’ve been thrusted into frequently feels like it was meant for someone else. Even in the forgiving privacy of my bedroom, I am constantly surrounded by pictures, clothing, trinkets and trophies curtly reminding me of the life I’ve had to let go of this past year. I can’t get dressed in the morning without seeing t-shirts representing programs and communities I used to be a part of, or hop in the car without seeing college bumper stickers that were once filled with pride and promise, but now burn with the sour taste of sorrow. Every new day of mine starts and ends in a shrine of my old life, while the hours in between burst with reminders and recollections of everything I’ve lost. For the past eight months, I have fumbled around my childhood home, trying to accept this new version of myself, all the while resenting that it even exists.
I’ve become a regular at the physical therapy clinic over the past five months, consistently coming twice a week for my hour-long sessions. I’ve never really been a regular anywhere, and I certainly never expected it to be here, of all places. As I set up in the gym, waiting for my physical therapist to finish up with a previous patient, I take in my familiar surroundings and wonder how this accustomed routine can still manage to feel so foreign. A year ago, I was in class at a university I adored. A year ago, I was juggling homework assignments with rehearsals, singing Italian arias in practice rooms and wondering what musical might be chosen for the upcoming semester. Now I’m sitting in a gym at a physical therapy clinic, peddling my feet on a recumbent bike and doing exercises that are designed to help me stand in the shower and go to the grocery store. The change is enough to make me dizzy, or maybe that’s just POTS.
Despite the overwhelming change, I’ve discovered the remarkable capacity to adapt that every human carries within. I’ve learned that it doesn’t take long to latch onto the in’s and out’s of chronic illness, and I’ve quickly gotten used to the salt tablets and electrolyte drinks and slugging liter after liter of water. I’ve gotten used to my medication regimen, the slow mornings, even having to sit in the chilly, shorter showers I’ve begrudgingly been forced to adopt. But I’ve never gotten used to the loss illness brings, the persistent canceling of plans, and all of the sacrifice that comes with putting your health first. I’ve not yet gotten used to the novel post-diagnosis life, the “new normal” people speak about that’s never once felt normal to me. I trust one day it’ll click for me and I’ll find a way to live beside or without my illness, going through my days unchained, but for now, I’m still figuring it out, half heartedly trying to get used to things I frankly don’t want to get used to.
An assortment of my favorite salt tablets and electrolyte drinks.
I can get through a Tuesday with my eyes closed, and I can recite the sodium content in various different electrolyte drinks without missing a beat. Off the top of my head, I can tell you the average time it takes for someone to get diagnosed with POTS – a lengthy four years – and I can also probably crush you in a game of Words With Friends (I’m kind of a pro by now…). But the one thing I can’t do is get used to the realm of chronic illness, and all the sacrifice it demands. I can’t get used to the world of symptoms, the too many days spent feeling unwell, and the holidays and birthdays shared with my condition. I still have yet to settle into the unforgiving flare days, the laundry list of limitations, and all the stolen time that’s taken from me daily. I can’t, I won’t, and I don’t think I ever will.
You get used to chronic illness – after all, it is chronic – but you also never do. At least, I certainly haven’t.
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.
The dreaded question. The lethal question. The loaded emotional landmine that’s constantly strewn about. It’s asked at the grocery store, at your therapist’s office, when you bump into an old friend in the middle of a busy parking lot. Sometimes, it’s a question we’re ready for. We’ve come up with some clever, creative way to deflect what’s really going on inside, or we brace it like an aggressive bust of wind, brave and unnerved. Sometimes, we’re not so ready. It catches us off guard, sends daggers into fresh wounds, and adds another layer of confusion to our frayed, dismantled lives. “How are you” is a question with various layers, used in various situations, for various different reasons. If you’ve ever found yourself hating this question, then this post is for you.
I’ve been asked this question a lot this past year. Often from people who knew I was in the middle of a grueling, tedious diagnosis journey, but also from people who were completely unaware of the unnamed, internal battle that completely uprooted my life. I grew to loathe this question and dread those three words because I never knew the right way to respond. The people-pleaser in me was too scared to be frank about how absolutely not-fine I was, and then there were other variables such as who was asking, where we were, how much time we had to talk; I wasn’t going to unload my emotional baggage in the middle of the grocery store to a mom of an old classmate I hadn’t seen since elementary school. She had frozen peas in her cart. I had a racing heart rate and limited ability to stand. That was not the time to unpack the unraveling of my old life. That was not the time to be honest.
A lot of times, I lied about how I was doing out of the sole purpose of convenience. It’s easier to stay on the surface of feelings when time is running short, when schedules are packed and rigid, and diving down to the depths of our darkness is an activity we don’t have time for. Other times, I lied to avoid derailing the conversation, or making friends uneasy about how upset I really was. Many people don’t know what to say when the response to “How are you?” is anything less than “fine,” and I wanted to prevent the lengthy awkward pauses, the stammering and searching for words that come when people grow uncomfortable. I was tired of my reality making people uncomfortable. So at some point, I locked the truth away. I stuffed it into the bottom of a drawer like a ratty old t-shirt, unfit to wear in public.
Sometimes I did try to be honest. I tried to tell my friends and family how hard it was to be at home, debilitated and overwhelmbed by an illness that at this point, was still unnamed. I tried to tell them how envious I was of other people who were still at school, living the life I wanted, and how difficult it was to watch the world go on without me. Sometimes my candor would open up the conversation, allowing a deeper connection to take place between us. But many times, especially with young people, I found they would freeze up, starkly unequipped to deal with these kinds of heavy conversations. My young college friends offered support and encouragement in the ways they knew how, and while their kindness and compassion deeply touched me, they usually didn’t have the life experience to fully understand and many of them felt pressure to know the exact, right things to say.
I wish I would’ve told them that I never needed a perfect, comforting response. I wish I would’ve told them that it wasn’t advice or encouraging pinterest quotes I was looking for, but someone who would show up, who would weather the storms with me and speak honestly about what they couldn’t understand. I didn’t need my friend to be my therapist, I already had one of those and a great one, in fact. I didn’t need to be told “everything happens for a reason”, and I also didn’t need constant reassurance that everything was going to be okay. Somehow, I had quiet hope that everything would eventually work out (emphasis on eventually…), it was just buried underneath mountains of grief and hurt and anger and exhaustion. I didn’t need someone to fix my problems (though that would’ve been nice…), I just needed a friend to help me ride the waves.
Somewhere along the path of constant “How are you?” and “How have you been?” questions, I started to cling to the response of “hanging in there.” To me, it was like a neutral, meet-in-the-middle kind of answer; an optimistic reply that would assure my friends I wasn’t falling into a massive, black pit of despair. It wouldn’t cause the blunt discomfort the response, “absolutely, utterly terrible” would create, and it was also kind of halfway true, so it wouldn’t be considered a flat-out lie. And so it became my go-to. I used it at the grocery store, I used it on texts from friends at college, and I used it on distant family members, careful not to cause any unnecessary worry about my progressively worsening, undiagnosed medical condition. It was safe, it was easy, but it was actually still a lie. Looking back, I despise those three words now. I wasn’t “hanging in there,” I was hanging by a thread, and hardly, at that.
Picture of an old conversation via text, showcasing one of my classic “hanging in there” responses.
While I understand my motives and am aware of the sometimes necessary convenience of the typical “fine” response, I regret not being more honest when people asked me “How are you?” I used “hanging in there” like it was a synonym for “barely holding on.” I clung to the phrase like it was a state of being I could reach, if I just said it often enough. But “hanging in there” is not for when an illness uproots and derails your life. “Hanging in there” is for twiddling your thumbs as your dinner heats up, or waiting a week and a half for your online shopping order to be delivered. As much as I tried to deny it, “hanging in there” was a lie, and one I still regret to this day.
So how am I now? I’m a bit of a mix between restless and hopeful. Somewhere in between frustrated and okay. I jump between these like a ping pong ball, never quite landing in one, but not getting stuck in one either. I still haven’t mastered the loaded “How are you?” question, and I often find myself jumping to the “I’m good!” response a little too soon. But I’m learning. I’m making room for not being okay, and letting go of expectations of what that’s “supposed” to look like.
And what about you? Are you “fine?” Are you “hanging in there?” Or are you absolutely positively terrible, taking your days breath by breath and hour by hour? We’re living in unprecedented times, and that can bring unprecedented feelings. But I urge you to invite it all in, to reject the convenient, comfortable answers. I urge you to have those hard, heavy, honest conversations because frankly, now we’ve got nothin’ but time.
