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.
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 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”.
