“So are you all better now?”
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.
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.
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”.