The Unbreakable Hope

A blog about my experience with chronic illness and finding hope in the darkest days

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Start Small, Start Today: How to Get Involved With Dysautonomia Awareness Month

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On October 5, 2024

In Uncategorized

The air is crisp and the leaves are falling (somewhere else though, further north of Texas). Warm, autumn light settles softly onto everything, painting ordinary spaces golden. All food carries a hint of pumpkin spice, and Halloween costumes are magically coming together for the one-and-only Spooky Night. It’s October; it’s the best month of the year.

I’ve always looked forward to October, mostly because I love fall, but now, I have a new reason: October is Dysautonomia Awareness Month! 

Dysautonomia Awareness Month was started 13 years ago by a nonprofit called Dysautonomia International (DI). The organization is dedicated to advocating, funding research, and providing resources for people with autonomic nervous system disorders in 50+ countries and 200+ cities worldwide. The founder, Lauren Stiles, has POTS and is a Research Assistant Professor of Neurology who focuses on autonomic disorders. With her background, Stiles ensures that DI is a trusted resource for accurate, evidence-based information on autonomic nervous system disorders.

Awareness months are informative, fun, busy, and tiring, but they’re important. For any condition, awareness can reduce diagnostic delays, improve resource availability, and promote compassion for patients within their communities. Awareness month is especially important for dysautonomia, because these disorders of the autonomic nervous system are widely under-researched, and too often, misdiagnosed. 

Graphic of a clock explaining the average diagnostic delay for POTS is 4 years

I’m assuming that if you’re reading this post, you probably know me and have already learned what dysautonomia is. In case you’re new here, and have no idea what that word is or means (or how to even try pronouncing it), here is a brief overview:

Dysautonomia (pronounced dis-oughta’-no-me-uh) is a medical term that describes a group of conditions that affect the autonomic nervous system. Our autonomic nervous systems control all the automatic functions of our bodies, like heart rate, digestion, sweating, and more. When this system doesn’t work the way that it should, it can cause various debilitating problems. Some forms of dysautonomia are mild, while others are fatal, but all of these conditions can be incredibly debilitating. 

Many people have not heard of dysautonomia and assume it’s rare, and some forms are. But new research suggests that over 6 million Americans live with POTS, a common form of this condition, which is more than the amount of people who are diagnosed with lupus, multiple sclerosis, and Parkinson’s combined. And yet POTS receives a fraction of their research funding.

On average, POTS receives $1.5 million dollars of research funds from the NIH. This might sound like a lot, but in comparison, “other diseases that are about as common in women as POTS, like multiple sclerosis and lupus, have received an annual average funding of $118 million or $127 million respectively,” as reported by The Washington Post. To break this down, out of their $47 billion annual budget, the NIH only spends 33 cents per patient on POTS research.

POTS is not life-threatening, like MS and lupus can be, but it is dramatically life-altering. Studies from Vanderbilt and the Mayo Clinic have shown that the level of disability seen in POTS patients is similar to the disability seen in patients with congestive heart failure, or on dialysis for end-stage kidney failure. 25% of POTS patients are so disabled, they’re unable to work or attend school.  

POTS can be caused by different triggers, such as concussions, autoimmune diseases, surgery, pregnancy, and most notably, viral infections. At least 40% of POTS cases develop following an infection, so it’s not surprising that many people have developed dysautonomia after getting sick with COVID-19. In fact, research suggests the number of people dealing with POTS has roughly doubled since the pandemic, and will likely continue to grow.

Awareness is the first step towards more research and, hopefully, better treatments. At the moment, there is no FDA approved medication for POTS. Dysautonomia International has been funding more POTS research than the federal government, however, because of their tireless efforts, this is starting to change! NIH investment in POTS is increasing thanks to all the people who participate in Dysautonomia Awareness Month and have helped support this organization. In the 2023 fiscal year, the NIH funded 6 POTS research grants, which is double the amount of the previous year. With your help, we can continue to grow that number!

There are a variety of ways to get involved with Dysautonomia Awareness Month, which can be found on DI’s website and also in their recent webinar posted to YouTube. But to make things even easier for you, I have highlighted a few options below (with links!):

Join an in-person or virtual fundraiser

  • Volunteers for Dysautonomia International are hosting a 5k POTS Walk in Boston on October 19th. Don’t live in Boston? Doesn’t matter! You can join from wherever you are through a virtual registration option. Virtual participation can look however you want it to: making a donation, organizing a small walk with your family or friends, walking 5 minutes every day in October, or throwing on a turquoise t-shirt to virtually cheer on the in-person racers. Btw, in-person and virtual participants are eligible for fun prizes! 
  • DI is partnering with Panda Express again this year for another virtual restaurant fundraiser! Order pickup or delivery from any Panda Express location nationwide on October 18th and apply code 925183 in the Fundraiser Code Box at check out. 28% of sales will be donated to Dysautonomia International!

Host an in-person fundraiser

  • Many restaurants, chains or local, offer fundraising opportunities. Check out their website or reach out personally to your favorite place to eat and see if they offer dine-in days, coupon programs, or fundraiser nights for charities and nonprofits. Do some good while eating good food!
  • Organize a POTS walk/run, bake sale, sports tournament, art night/festival, get creative! Fundraisers should be FUN, so pick something you like to do, and turn it into a fundraiser! You might try thinking of what communities you’re already a part of, and how they could help out with this cause.

Host a Facebook Fundraiser

  • Want to fundraise without leaving your house? Start a Facebook Fundraiser! Located under the menu icon (in the top right corner of your Facebook page on desktop), click on the “fundraiser” tab (at the bottom right of your screen), and Facebook will walk you through the rest. Here’s a link to a Help guide, if you want more detailed instructions. 

Request a lighting event in your community

  • Many landmarks and notable buildings will change the colors of their lights for awareness efforts. Requesting a lighting event can be a fun (and usually free), way to raise awareness in your community. Dysautonomia’s awareness color is turquoise, and DI has successfully lit up many locations for awareness month, such as Niagara Falls, The Cleveland Tower, and Houston City Hall, to name a few. Many locations that often change lighting colors have an established process for requesting lighting events. If you have a place in mind, check their website for an online form or contact information for the building or monument’s management. DI provides a free letter template that you can use when making your request. 

Donate

  • When in doubt, donate! As I mentioned above, the NIH spends an average of 33 cents per patient on POTS research. We can do better than that. If you would like and are able, you can donate through Dysautonomia International’s website. Instructions for donating by check are also available through that link.

Share your story

  • If you have a form of dysautonomia yourself, one of the best ways to raise awareness in your community is by telling your story. It can feel scary to open up about your struggles, but you might be surprised at how many people can relate. Share in whatever way you feel comfortable: talk with a family member, friends, or post on your social media. One of my favorite quotes is, “The shortest distance between two people is a story.”

Share Dysautonomia International’s posts on social media

  • Getting involved with Dysautonomia Awareness Month doesn’t have to take a lot of time or energy. A simple, free, and effective way to help raise awareness is to engage with Dysautonomia International on their social media accounts. Follow, subscribe, like, comment, or share any of their content this month (or every month!)  
  • X/Twitter: @Dysautonomia 
  • Instagram: @dysautonomiaintl
  • Facebook: @Dysautonomia International
  • YouTube: @DysautonomiaInternational

Check in with someone who has dysautonomia

  • Dysautonomia Awareness Month is a great time to check in with anyone you know who has a form of dysautonomia. Chronic illness can be incredibly lonely, and building community often starts with a simple, “Hey, how’s it going?”

If you’ve made it to the end of this blog post, congratulations! You are an empathic, kind, helpful human being. Dysautonomia awareness has come a long way in the 13 years of DI’s campaign, but we’ve still got more work to do. My hope is that the first time someone hears the word ‘dysautonomia,’ it’s not in a cold, sterile exam room. I hope that in the future, if someone does develop POTS, they’re not forced to give up careers or life-long dreams, that they’ll have more options, effective treatments, and better access to specialist providers. 

We can’t change the world overnight, but we can raise awareness for dysautonomia in our communities, starting small, starting today.

Onwards: A Reflection on Benjamin Button and Graduating

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On May 22, 2024

In Uncategorized

It’s Wednesday, which means that it’s either life as usual or I’m headed to the infusion center. Today, it’s the latter, and I’m in the passenger seat gulping water and squeezing a stress ball, hoping both activities will allow the nurse to find a vein on the first stick. 

For almost 7 months now, I’ve been receiving the drug I did well on in the clinical trial–IVIG. My mom drives me to every biweekly infusion for three reasons: firstly, she is kind. Secondly, if parked for 4 hours in Texas, the car will be hotter than a sauna in hell. And thirdly, in 4 hours, I will be too sleepy to drive myself home. 

As I settle into the cush infusion chair, the nurse asks if I brought anything to work on today. It takes me a moment to remember that I didn’t, that I no longer have papers to write because I’ve finally completed my degree. When I tell her this, I learn that she went to UT for her undergrad too. “Best 5 years of my life,” she said. 

I am the elephant in the infusion room. Every patient is older than me, some by 60 years. Before receiving our medications, the nurses always ask us to confirm our date of birth. I can’t help but feel self-conscious saying the year “2000” aloud.

Two infusions ago, I finished reading Tales of the Jazz Age, a collection of short stories by F. Scott Fitzgerald. The first story was my favorite, “The Curious Case of Benjamin Button.” It tells an imaginative tale of a baby who is born an old man and ages backwards. As the patient across from me tells the nurses about the challenges of growing old and developing more and more ailments, I can’t help but think about how my life is the reverse of hers: how I’m young and my doctor tells me that my condition might actually get better as I get older, when my immune system (hopefully) calms down. 

Am I Benjamin Button? Is this what it feels like?

A picture of my copy of F. Scott Fitzgerald’s Tales of the Jazz Age.

After I’m unhooked and discharged, I walk to my mom, who is waiting for me in the car with the AC on full blast. On the way home, we pass the arena where I graduated high school. I point it out, and we remember. Now, 6 years later, I’m graduating college. 

Anyone who’s been reading this blog (and by the way, thank you) probably knows that the past several years have been bumpy for me. I’ve really enjoyed my time at UT, yet I can’t say that college was the best years of my life. In fact, much of my earlier experience was quite traumatic–starting college out-of-state only for my health to deteriorate and be thrown into the adult medical world, alone and 800 miles from home. 

It’s painful to remember where I started and what I lost along the way. But reflecting on the past also makes graduation even more meaningful to me, because of how often I doubted whether I’d ever see this day. 

My graduation was a practically perfect afternoon. Miraculously, Texas had a mild (emphasis on mild) cold-front, and the weather was lovely–not too hot for May. All of my close family were able to attend, and I snagged extra tickets for my brothers, who made it back from their Boy’s Trip just in time. 

The ceremony for English and History majors took place in an auditorium on UT’s campus. Funnily enough, though the official colors of UT Austin are white and burnt orange, the colors for the ceremony were the official colors of my previous college: blue and red. In fact, several of my classes as a musical theatre major were held in auditoriums. As I sat next to my UT classmates, I felt like I was in two places at once. 

A picture of the English and History graduation ceremony at UT.

I knew that as part of the ceremony, I was to walk across the stage and receive my “diploma” (the real documents are mailed afterwards…), but I underestimated how weird that would feel for me. As my row lined up backstage, I stood in the darkness, shocked at how strange it was to be back here again. It was both familiar and foreign, and also sad–I used to love this place, had once felt so comfortable in these wings.

I managed my entrance without tripping, and waved to my family in the back. Even with POTS, just having to walk was easy enough. No lines to remember, no dance numbers or songs. 

After the ceremony, my family and I took pictures at the UT tower. For a brief moment, I time-traveled back to when I was a freshman, sitting near Belmont’s bell tower. I’d always imagined I would take pictures there when I graduated.

I’ve been thinking a lot lately about whether our lives are fated, and how much say we really have in the people we are. A few days before the ceremony, I stumbled across a picture from my high school graduation. In it, I’m standing next to my grandma, holding my grad cap, which I had decorated with the name of Belmont inside the shape of Tennessee. I’m smiling at the camera, thinking I know exactly how my life is going to go. It wasn’t until recently that I noticed my grandma is holding a book by Virginia Woolf, a writer I had not yet read and would later become my favorite class as an English major at UT. 

A picture of me and my grandma at my high school graduation.

Life is unpredictable, absurd, cruel, and beautiful. At many points along this journey, I got woozy from all the twists and turns. For a stretch of time, hope was hard when all I saw was darkness ahead. But in the words of Chanel Miller, another favorite writer of mine, “You have to hold out to see how your life unfolds, because it is most likely beyond what you can imagine. It is not a question of if you will survive this, but what beautiful things await you when you do.”

At UT, I got a second chance. I learned there is life after loss, and I discovered that I had more interests than I knew, beyond music and theatre. As for what’s next, I’m working on finding a full time job so that I can have health insurance when I turn 26… And am hoping to land somewhere cooler, eventually. 

Onwards we go.

Alli

You Are What You Wear: Superhero Edition

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On December 18, 2021

In Uncategorized

Even with my eyes closed, the fluorescent lights were bright–too bright. I would’ve tossed and turned, done anything to rid the restlessness, except for that I was exhausted, too tired to move. My body tingled, my muscles twitched, I lay still in the hospital chair. The nurses let me be.

I felt like I hadn’t slept in a year. I mean, I had, but when you wake up more tired than when you went to bed, does that really count as sleeping? Sleep should leave you feeling rested, refreshed; I hadn’t felt that way in a long time. 

Eventually, I heard someone call my name, softly.

“Ms. Howells,” they cooed. They sounded a million miles away. I began to blink my eyes open, and found two white coats standing above me.

The ER attending and her resident were tall, slender, looming. Through the fog that swaddled my brain, I questioned whether they were real. The woman in the white coat spoke carefully, saying, “We’re so sorry, but there’s nothing we can do to help you right now. We recommend you follow up with your primary care provider and…”

I tried to follow to the rest of their words, but they were leading me somewhere that I didn’t want to go: more frustration, more disappointment, deeper despair and terror. I tried to keep my composure and nod at all the right times, but it was so hard. I wanted to go home. Not back to my dorm room, but home. I wanted to be anywhere else in the world but that overflow ER room with its needles and saline and doctors who couldn’t tell me what was wrong. 

The mouths of the white coats continued to open and close, their voices coming in and out like radio static. I wanted to shut it off. The frequency was piercing. 

As the attendee finished her final discharge instructions, her face softened and I watched her mold into a mother. At once, her fierce features relaxed and the secure command she’d worked years to obtain as a woman in medicine fell away before me.

“I have a daughter your age,” she spoke into the space between us. “It must be so tough going through all this in college.”

I was unaware that what she’d say next would anchor me in the approaching medicine-filled months. I didn’t realize that such a brief display of empathy would salvage my tarnished relationship with doctors and remain as proof throughout my diagnosis journey of real goodness amongst all the terribleness in life.

“You’re superwoman,” she continued, implying strength, “and you’re gonna change the world someday.”

Her kindness stunned me, startled me, snapped whatever shabby thread that was barely holding me together. It was like a flash of light, so bright and intense, I had to look away.

With my eyes to the floor, the physicians left and I broke apart in the hospital chair. Having lost the willpower to fight back, I released the tears that were already flowing. They covered my face like wounds, like war paint, like a shield. In my tears, I found my armor. In my vulnerability, I found strength.

…

This past Thursday was the two year anniversary of my POTS diagnosis. The day marked two years of progress and recovery, two years of healing and brokenness, two years of learning to navigate life with a fussy, dysfunctional nervous system. Last year, December 16th felt like a funeral. This year, it felt more like a birthday party, a celebration of strength reborn.

To honor the day, I dressed up as Superwoman. The costume felt significant not only because it links to the impactful encounter I had with an ER doctor, but also because it relates to two of my favorite poems written about disabilities: “Wonder Woman” by Ada Limón and “Going Blind” by Rainer Maria Rilke.

A photo of me dressed up in a Superwoman costume. I’m holding up a peace sign, to symbolize my 2 year anniversary of being diagnosed with POTS.

“Wonder Woman” by Ada Limón shares the story of a woman’s experience with chronic, invisible pain. After a discouraging ER visit, the woman spots a girl dressed as a superhero and is reminded of her own, “indestructible” strength:

“Standing at the swell of the muddy Mississippi
after the urgent care doctor had just said, Well,
sometimes shit happens, I fell fast and hard
for New Orleans all over again. Pain pills swirled
in the purse along with a spell for later. It’s taken
a while for me to admit, I am in a raging battle
with my body, a spinal column thirty-five degrees
bent, vertigo that comes and goes like a DC Comics
villain nobody can kill. Invisible pain is both
a blessing and a curse. You always look so happy,
said a stranger once as I shifted to my good side
grinning. But that day, alone on the riverbank,
brass blaring from the Steamboat Natchez,
out of the corner of my eye, I saw a girl, maybe half my age,
dressed, for no apparent reason, as Wonder Woman.
She strutted by in all her strength and glory, invincible,
eternal, and when I stood to clap (because who wouldn’t have),
she bowed and posed like she knew I needed a myth—
a woman, by a river, indestructible.”

“Wonder Woman” by Ada Limón

“Going Blind” by Rilke recounts the isolation of illness and how the idiosyncrasies of disability can access a world unreachable to the abled person. In the last line, the poem’s translation suggests that in some ways, having a disability is like having a superpower:

“She sat at tea just like the others. First
I merely had a notion that this guest
Held up her cup not quite like all the rest.
And once she gave a smile. It almost hurt.

When they arose at last, with talk and laughter,
And ambled slowly and as chance dictated
Through many rooms, their voices animated,
I saw her seek the noise and follow after,

Held in like one who in a little bit
Would have to sing where many people listened;
Her lighted eyes, which spoke of gladness, glistened
With outward luster, as a pond is lit.

She followed slowly, and it took much trying,
As though some obstacle still barred her stride;
And yet as if she on the farther side
Might not be walking any more, but flying.”

“Going Blind” by Rainer Maria Rilke

I’m a big fan of the way these poems showcase the inner struggles of illness that often go unseen. I love the way Limón and Rilke find power in debilitating circumstances and see strength in moments of weakness and vulnerability.

It’s taken me a while to uncover strength in my worst memories (and a lot of work with my therapist). For the longest time–two years to be exact–I saw only pain, tears, and terror when I reflected on my lowest moments. I’m learning that strength doesn’t always look how we think it should. Contrary to popular belief, it takes strength to let yourself cry, or to ask for help and receive it. Sometimes, strength can look like weakness.

In full disclosure, the Superwoman shirt was actually supposed to be a Halloween costume. It was to be a costume only I knew the true significance of, but when it arrived late on November 2nd, I had to reassess my plans. Instead of returning it, I figured I’d save it for a day when I needed some strength. As December 16th rolled around, the shirt felt increasingly more relevant.

A picture of my Superwoman costume.

The day before Halloween, an intern at physical therapy asked me if I was dressing up for Halloween.

“I’m gonna be a superhero,” I said. “Superwoman.”

Despite her mask, I could see her eyes crease into a grin.

“You already are,” she said.

Swimming Lessons

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On June 21, 2021

In Uncategorized

Yesterday marked the last day of the 2021 Olympic Swimming Trials. My family and I have been watching it throughout the week, eager to turn on the tv and dive into a world we no longer inhabit. 

Swimming was a large part of my childhood but it was an even bigger part of my family. In fact, it’s how my family came to be: my parents met at a swim meet. My dad excelled on the high school swim team and my mother was born a water bug. Growing up, I watched her direct a swim lesson program, teach lessons to the neighbors at the local pool, coach on a club swim team, and even petition for a local natatorium. For my mother, water is a magnet and she can’t resist its pull.

My middle brother swam briefly before switching to basketball and my oldest brother competed nationally before going on to swim in college. I myself swam for ten years on club and summer league swim teams, but halfway through high school, I left to pursue musical theatre. Swimming was a rite of passage shared by every member of my family, and we each have our own unique relationship with the sport.

A picture of my dad and me at a swim meet.

Watching the Olympic Swimming Trials has brought me back to my swimming days, which could also be considered my pre-POTS days. They were the days of boundless energy, of two hour swim practices and the sweaty dry-land conditioning sessions that followed. They were the days of eating whatever I wanted, of killing time on deck with friends, of giggling underwater and fiddling with my goggles on the wall as my coach yells at me to keep swimming. I never loved swimming enough to commit to the sport the way others have–the way my oldest brother had–but there was enough love to look back fondly on the memories, which is what I’ve been doing a lot of lately. 

I’ve swam laps at the neighborhood pool twice this week, mostly to keep up my POTS treatment but also to pretend I am an Olympic swimmer (no shame). Swimming is actually great for POTS because it’s horizontal exercise. Plus, the pool water helps me get some sun without overheating. Major win! My olympic fantasy collapses after 100 meters in the pool however, when I come up gasping for air and realize how much distance lies between my daydreams and the swimmer I am now. 

In passing, I mentioned to my mom how I can’t wrap my head around the fact that at 15 years old, I swam an average of 7,000 yards at 2 hour swim practices, 5-6 times a week. Sometimes, I had swim practice twice a day. And although I was certainly ravenous and ready for a good night sleep afterwards, my tiredness was minuscule compared to the exhaustion I experience from POTS. 

“I took my abilities and accomplishments for granted,” I told my mom, whilst feeling compassion for my 15 year old self who couldn’t possibly understand. She didn’t know what she could lose, what she would lose in time, and the privileges she’d one day learn to live without. 

A picture of me diving into the pool for a relay.

The memories of what it’s like to be normal, to go to swim practice and stand in the shower and still have energy left over, flicker in my mind briefly before quickly fading away. They’re like a name I can’t remember but lives on the tip of my tongue, or like a person that looks familiar but whose face I can’t quite place. They are a sketch of my old life, a rough outline but nothing more. The memories are my childhood, the majority of my life, yet they are so hazy that I question whether or not they were a dream. 

Last Thursday, I stopped by the local tax office to pick up my permanent disability parking placards. They’re mostly for school, so that I can park in disability spots closer to classes and reduce my amount of walking across campus, but they’re also for flare days or gigantic, Texas-sized parking lots. It felt surreal to hold them in my hand and recognize they were prescribed for me, not for my grandpa or anyone else, but me: the same girl who swam two hour swim practices six times a week. Plus dry-land.

There’s no shame in a changing body or having disabilities and limitations. There’s no failure in using a disability parking placard or any other form of accommodations. Yet as I held the plastic placards on a steamy Texas afternoon, I wondered how many other people felt like I did: shocked to be acquiring these blue signs much sooner than expected. 

I thought of all the other POTS patients like me, who lived active, athletic childhoods before they were debilitated by chronic illness. Are their hearts also filled with grief for all they’ve lost? Are they too wandering around in their post-diagnosis life, dazed and confused and maybe even a little embarrassed, wondering where that little sporty kid went and if they’re ever coming back? 

Picture of me as a kid, standing behind the block before my race.

Thanks to a year and a half of physical therapy, these days I feel strong. I can go out dancing with friends, complete grocery shops with no problem, and spend over an hour in fitting rooms, trying on dress after dress after dress. In many ways, I feel the healthiest I’ve ever been, even if I do still have limitations. But feeling my strongest and most vibrant whilst picking up disability parking placards makes that whole experience even more confounding. 

In some ways, I wonder if my time as a swimmer equipped me for the challenges of chronic illness. Through swimming, I gained grit, endurance, and resilience. I learned how to keep pushing when the set got hard and my heart was pounding and all I wanted to do was quit and float in the middle of the pool. When the coach wrote a set on the board that looked entirely impossible, I understood nobody could finish practice for me, that I’d have to just keep swimming, no matter what. 

A Different Kind of “New Normal”

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On March 13, 2021

In Uncategorized

The sun sets and I journey upstairs to take a shower. I pull the shower head down, let it hang. I step into the tub, I sit. I didn’t used to shower this way; I used to stand and sing. Now, I sit in silence, listening to the water spray. It’s loud, louder than I remember. Everything seems loud these days. 

Sitting in the shower has become normal to me. Preferred, almost, but only because it doesn’t exhaust me the way standing in steam does. If I had it my way, I’d be belting in home-made saunas like I used to, but with POTS and a heat intolerance, I’ve learned to adapt. To my bewilderment, I’ve found myself in the midst of what most people call a “new normal.”

I’m not the only one grappling with a ‘new normal’ right now. The phrase is plastered all over the internet, dominating news headlines, and I’d go so far as to say it was one of the most-used expressions of 2020, outshined only by the words “Zoom” and “unprecedented.” Today, “new normal” is used in reference to the pandemic and the various ways our lifestyles have changed–from face masks to social distancing, to diligent disinfecting and more. But “new normal” isn’t a novel phrase, or reserved solely for this covid-19 era. It’s a phrase that’s also popular in the world of chronic illness and that I’ve come to know very well.

A photo of popular words used during the pandemic; image from John DeMont’s article, “The Plague of Pandemic Words”

In the months leading up to my diagnosis, I went on countless social media deep-dives. Plunging through hashtags of #POTS and #dysautonomia, I was desperate to find people in the same boat as me. I was hungry for advice from people who understood and were further along on the process than I was, with residency in what many call the “the other side.” I scrolled through post after post, my thumb turning numb, hearing variants of the same message: “You will find a new normal.” But would I?

At the time, these words meant very little to me. Without an official diagnosis or the resources for a way out, this advice felt flimsy, two-dimensional, like an aspiration forever out of reach. I could see its appeal: “new normal” comforts, encourages, heartens, and gives hope. It lives dependent on the promise of flexibility and versatility, reliant on the potential of resilience and grit. But as I stayed suspended in survival mode while I waited on a diagnosis, I couldn’t comprehend what it truly meant to move forward, or what that would look like, or if I would ever.   

I heard this phrase yet again while meeting my dietician. A woman who lives with a chronic illness herself, she spoke from personal experience, assuring me that I too would eventually “find my new normal.” She promised me that one day, I won’t think twice about what supplements to take, that I would slow down and adjust to my limitations as needed, eventually settling into a slower speed and rhythm of life. She swore to me that with time, my foreign reality would become familiar, and that my debilitating symptoms would lessen as I learned to manage my condition. My dietician had no doubt in my ability to grow and adapt, believing with a steel-like, heartwarming conviction that ultimately, I’d prevail. 

I was touched and a little amazed, though I confess I wasn’t truly convinced. I couldn’t yet fathom a future beyond my reality of crawling to the bathroom, or the sleepless nights due to unforgiving symptoms, or spending hours every morning trying to force my body upright. My future was still fuzzy to me, still too uncertain to discern, and it was distorted by my growing fear that I would never be well again. In February of 2020, a “new normal” seemed impossible to me, as likely as if you told me I’d been invited to brunch on the moon. 

Theoretical picture of me having brunch on the moon. Image from Smithsonian Magazine

In a sense, the prospect of a “new normal” also felt undesirable to me. I didn’t want my reality to become normal, I wanted a refund or a time-machine; some way to transport back to my old life. To achieve a “new normal,” I would first have to accept my state of affairs and at the time, that seemed like an unreasonable request. The thought of my 2020 reality becoming normal repulsed me; I didn’t want a “new normal,” I wanted my old normal, and stat.

But fortunately, my dietician was right. The thirty pills and supplements I take every day are now as integrated into my routine as is brushing my teeth each morning. If I close my eyes, my mug of chicken broth after breakfast is just a unique cup of coffee, and has become no more unusual that pouring myself a cup of tea. With time, I have learned how to maximize my energy, designing my days around my body’s needs, and I’ve managed to carve a life out of the confines of both my illness and covid-19.

To the same degree, I’ve grown “immune” to the oddity of face masks in public. It no longer seems unusual to visit with my grandparents on the driveway as opposed to inside their kitchen, and I’ve gotten used to swapping out hugs for hand-waving, even though I do miss the former. I’ve seen first-hand from my experience with chronic illness that humans carry a remarkable capacity to adapt, so it comes as no surprise to me how we have adjusted to pandemic life: conducting classes online, building collections of reusable face masks, and finding ways to carry on when the life we knew was halted. 

But even though I meet all the qualifications required for “new normal” status, if you asked me, I’d confess that my life still doesn’t feel normal. It’s more so that I have gotten used to its weirdness; nothing about healing from chronic illness in the middle of a pandemic feels normal to me. 

An all-time favorite writer of mine, Suleika Jaouad, is also familiar with the expression “new normal.” Having been diagnosed with leukemia at the grand old age of 22, she knows first-hand how illness can sever a life, interrupting what was and forever altering what’s to come. In her 2013 NPR interview, she confesses, “I don’t like the expression new normal because I think life doesn’t really go back to normal.” She revamps the phrase instead, rebranding it as “new different.”

I like the concept of “new different.” I like the way it allows for radical, necessary change, and I like the way it accepts the present as it is, without any comparisons to The Before. The phrase “new different” allows our lives to continue changing as they inevitably will, while shedding the facade that we can ever recreate the past. Unlike “new normal,” “new different” welcomes change, opening the door to more and more life.

A photo of my mom, who helps me embrace my “new different.”

Two days ago, I went on a walk to check the mail. It’s a short walk, not too far, but on my way back, I kept walking. Up the street and around the cul-de-sac, talking my time while crossing the deserted road. I kept walking because it felt good. I repeat: I was exercising upright and it felt good. It was a sensation that in my depths of my illness, I was certain I would never have again. 

It was liberating to have the choice to keep walking. To have the freedom to control the duration of my walk, instead of surrendering to symptoms that often make that choice for me. It was liberating to leave my limitations at home, to have a break from being chaperoned by relentless fatigue and dizziness. As I approached a stop sign, I thought to myself, “What an incredible moment this is.” I was acutely aware of how remarkable it was to be walking and well after everything my body’s been through. I felt strong and content, borderline euphoric. I felt like my old self again, only more grateful this time. 

Like many, I made plans that shattered and crumbled to ruins while my life and reality fundamentally transformed. Like many, I’ve had to adapt and adjust to conditions that at times, were frankly unimaginable. Like many, I’m wading knee-deep in an aftermath, discovering what it means to find a “new normal,” or “new different.”

As I recover, it’s tempting to try to resuscitate the life I lived and the person I was prior to developing POTS. But illness, like other hard things, have a way of changing you to your core. And the longer I trudge through the aftermath, the more apparent it’s become that I will never again be the girl I was from before I fell ill. And maybe that’s the whole point. Maybe the point is not to find a new normal, but to find a new different, over and over again.

Snotty Sob Sessions

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On October 6, 2020

In Uncategorized

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.

A Year Ago

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On September 26, 2020

In Uncategorized

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.

We’re All In This Together

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On August 28, 2020

In Uncategorized

“What team?”

I hope you said wildcats.

Don’t know this reference? Why, that would be the one-and-only, iconic line from legendary crowd-pleaser and my personal childhood favorite, High School Musical: A Disney Channel Original Movie.

Gif of High School Musical cast jumping in graduation gowns.

Still confused? Well, I started my fall semester this week and the mild first day of school vibes on Monday had me rising a thick blue wave of nostalgia. High School Musical was a childhood staple of mine, and I walked into every school year secretly wishing it might reach the grand expectations set from the revered Disney trilogy. I never did get the tasteful cafeteria flash mob I was after (although I was a participant in multiple zombie flash mobs for my theatre department’s Halloween fundraiser. Not exactly the same thing…), or the angsty teenage romance with Zac Efron I’ve been wanting for years, but that’s never dulled my love for the iconic High School Musical movie. Or Zac Efron. Let’s be real.

Monday was easily the weirdest first day of school I’ve ever had, and if you would’ve told me nine months ago I would be beginning my sophomore year of college entirely online in the midst of a pandemic while battling POTS, I wouldn’t have believed you. Partly because there was a part of me that was truly terrified I’d never be well enough to return to school, but also partly because a pandemic? Really? No way. (Yes way, unfortunately.)

As I mentioned above, all of my classes are online this semester due to COVID-19, so the first day of school felt anticlimactic to say the least. Logging into an online seminar in the quiet of my childhood home doesn’t quite have the same effect that walking into a crowded, chatty classroom filled with new students and old friends does. As far as kickoffs for a new school year goes, this was easily the most underwhelming.

When I close my eyes, I can still remember my many ‘first days’ of elementary school. I can still smell the new Expo markers, the freshly sharpened pencils, the melting pot of scents that was the school cafeteria at lunchtime. I can still taste the Goldfish and fruit snacks that were tenderly tucked into my lunchbox, can still feel the peanut butter sandwiches on soft white bread glued to the roof of my mouth. Still, I can faintly hear the dull fog horn of the school bells, the squeals of children on the recess grounds, the rattling clatter of pencil boxes before they got worn and broken from careless use. These memories fill me with a heavy sense of warmth, and they’re the equivalent of a blanket wrapping around me on a winter night.

In these memories, I was fully healthy and able. In these memories, I ran around playgrounds and the school gym, dashing to and fro choir, orchestra, and theatre rehearsals, comfortably on my feet. Minus my senior year of high school, my time spent in primary and secondary school are mercifully untouched by chronic illness. I had not yet been knocked down by the beast that its POTS, had not yet been held back, reduced, or broken. I miss these memories more than I ever thought possible.

It’s both distressing and a relief that my life wasn’t always this way, that I didn’t always live with symptoms of some sort, with daily fatigue and discouraging limitations. These memories fill me with both grief and gratitude, with both joy and heavy sorrow. In this week’s wave of nostalgia, I find myself aching to go back for a day, for an hour, for a brisk minute in my body from before. I never thought I would ever say this, but I actually wish I could go back to public school once more, merely to bask in the ordinary that wasn’t ordinary at all.

In a way, these memories feel like a gift from my past self, an offering of respite I can return to as I move forward. These days, I find myself searching for the past in my future, trying to catch a glimpse in my reality of a life where I’m fully able and free. These memories are like a baseline I am trying to get back to, and also a reminder of how good and simple life can be.

It’s been a year since I’ve been in school, and a lot has happened since then. I’ve gotten diagnosed, I’ve spent nine months in a physical therapy program, and I’ve traveled into the crevices within me that are deep and dark and roughly jagged. Enrolling in school again, even if only online, feels like a triumphant switch from full-time patient to part-time, and it’s exciting to see a life, my life, finally building upon the rubble.

But alongside this excitement is a heavy grief of all I’ve lost. In these trying days, I know I’m not the only one who feels robbed of the college experience I wanted or planned for. I know I’m not the only one who mourns over the life changes that rippled ruthlessly through the masses this year. To those of you crying hot, angry tears over the changed plans you still can’t stomach, know that I’m crying with you. To those of you working your hardest to salvage what’s left of your school year, know that I see you and I understand. To those of you who can’t help feeling robbed or cheated of the year they worked so hard for, know that I am here, fuming right beside you.

In the wise words from High School Musical: “We’re all in this together”.

Gif of High School Musical cast dancing to finale song, “We’re All In This Together”

Healing is Hard

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On August 23, 2020

In Uncategorized

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.

The Worst Possible Question

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On July 27, 2020

In Uncategorized

“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.

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”.

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