While some health issues are visible to the outside world, many people face chronic conditions that don’t have externally visible signs or symptoms—also known as invisible illnesses. In mindbodygreen’s new series, we’re giving individuals with invisible illnesses a platform to share their personal experiences. Our hope is their stories will shed light on these conditions and offer solidarity to others facing similar situations.
In September 2020, I was adapting to the new COVID reality. Living mostly in isolation, I managed our three young boys in online learning while my husband spent long hours working as a doctor at a local hospital. There didn’t seem to be any light on the horizon, and like many Americans, I was dealing with the physical and mental consequences of the associated chronic stress and anxiety.
To manage our physical and mental health during the pandemic, my husband and I pieced together some gym equipment. That garage gym became my only sanctuary; exercising was the sole break I could take from my mom-turned-teacher responsibilities. Plus, my bedroom had recently been turned upside down during what I thought was to be a small, contained, five-week bathroom renovation. Needless to say, my household felt chaotic.
One September afternoon, I put my earbuds in and hopped on the stationary bike. That’s when the heart palpitations started.
At the first pedal stroke, my heart fluttered. It felt like a fish flopping around in my chest, but it passed quickly. I needed to burn some steam, so I ignored the blip and pedaled on. But then, there was another skip in my chest. This time it was as if my heart was pumping bubbles of air, rather than blood. One heart palpitation seemed normal—no need for alarm, right? But the palpitations continued with frequency, and it scared me.
I disengaged from the bike, left on my cycling shoes, and click-clacked through the house until I found my husband. He instructed me to lay down, checking my pulse. I was relieved to be married to a doctor with such calm composure—a stark contrast to my fluctuating levels of anxiety. He could feel the palpitations in the pulse on my wrist and asked me to rest until they stopped.
“Probably stress,” he concluded.
Over the next week, the flutters would come and go—most often when bending down—but I brushed it off as general stress and anxiety.
Then one day, my dog threw up in my son’s bedroom. As my son continued to interact with his Kindergarten teacher on Zoom, I got down on all fours to clean Scooby’s mess. That’s when the flutters returned. I stood up and walked to the laundry room to get more supplies, and more importantly, to distract myself.
Don’t be anxious. Don’t be anxious. You’re making it worse. You’re OK.
Diagnosed with anxiety two decades ago, I’m no stranger to an elevated heart rate and tightness in my chest. I tried all the usual cognitive behavioral techniques to calm down, but the sensations persisted. It felt like my heart was racing and skipping periodic beats as I phoned my husband, breathless and teetering on panic. I worried about the entire Kindergarten class watching me pass out on Zoom, and questioned if my oldest son would be able to call 911 like we had practiced in the past. To avoid any more panic, I decided it was time for an evaluation.
At the hospital, I was hooked up to monitors. Questions were asked, blood was taken, and the monitors beeped on. As I laid there, my body started to calm down, and I could feel my heart rate slowing. I asked myself what all anxious people consider from time to time: Is this all in my head?
I sensed the nurses and doctor were growing skeptical, as well. Not necessarily because they were unsympathetic, but because they see this all the time. Anxiety has a nasty way of making people think they’re dying.
How I finally received a diagnosis.
The doctor came in to discuss my blood tests. “Everything looks fine,” she shrugged.
I knew she was going to send me home without any answers, so I spoke up. At the risk of sounding “crazy” I told her about the trend I noticed: every time I bent over (to get on the bike, shave my legs, clean the carpet, go to the bathroom, etc.), my heart fluttered and I felt breathless.
She looked puzzled and asked me to demonstrate while the monitors were still hooked up. As I crouched toward the hospital’s beige vinyl floor, my heart rate jumped—right on cue. The doctor promptly ended our experiment and had me lay back down, where the heart rate went back to baseline.
The doctors continued to monitor me and await results, until there was a shift change. When the night doctor came to discuss my symptoms, he concluded there was no immediate threat and decided to send me home, where I could follow up with a cardiologist. Ummm…cue the worried, anxious mind.
I felt panicked at the thought of going home without an answer. Visions of me passing out while schooling the kids or having a heart attack while showering raced through my mind. Plus, I didn’t have a cardiologist! I was an otherwise healthy 40-year-old. My anxiety couldn’t handle one more stressor—especially a big one like this.
Thankfully, the ER doctor displayed compassion and offered another alternative: I could be admitted to the hospital overnight, remain on a heart monitor, and consult with cardiology in the morning. Early the next morning, I had an echocardiogram and saw a cardiologist. Immediately, he suspected a diagnosis and had the nurse perform an experiment. I laid down for 20 minutes, sat up for a few minutes, and then stood up, while connected to a monitor. Like before, everything was fine until standing: the pressure built up in my chest, my breathing accelerated, and the heart monitor spiked.
Proving the doctor’s suspicions, I was diagnosed with postural orthostatic tachycardia syndrome (POTS). This syndrome causes an elevation in heart rate with big postural changes, like bending over and standing up. As a “syndrome,” it involves multiple symptoms, which all occur on a continuum. Thus, my POTS experience can be quite different from another’s.
Generally, POTS affects blood flow when moving from a reclining to standing position. While we take the simple act of standing up for granted, a lot goes into coordinating this movement internally, including the maintenance of blood pressure and heart rate. Common symptoms include lightheadedness, fainting, and an uncomfortable, rapid increase in heartbeat.
“It’s not dangerous, just annoying and uncomfortable,” the doctor explained to me.
How I manage my POTS now.
The doctor prescribed me a blood pressure medicine to prevent my heart rate from getting too high. I was also given a list of lifestyle changes which can prevent episodes, such as staying hydrated, eating enough salt to keep my body in balance, and doing cardio. Perhaps most important of all, the cardiologist encouraged me to better manage my stress, which exacerbates both mental and physical illnesses.
No one knows for sure why I have POTS, and there is no cure. For some, it occurs post-viral infection; for others, it occurs after a serious infection, pregnancy, or trauma. And for many, like me, it’s a mystery.
It’s been almost a year since I received my POTS diagnosis, and I’m feeling a lot better. I actually consider myself lucky, as many other POTS sufferers go years without a diagnosis. I believe my time between onset and diagnosis was short in part because my symptoms came on so acutely. In a matter of one week, I went from having a couple heart flutters to a racing heart every time I stood up.
In addition, I am extremely in tune with my body (probable due to my anxiety), and was able to make the connection between bending over and a racing heart. I was lucky the cardiologist I saw knew immediately how to confirm his suspicions, and offer different ways to manage my symptoms.
Unfortunately, this is not where my invisible illness story ends.
A few nights after being discharged from the hospital, I crawled into bed and felt like the room was spinning. It was so bad, I had to take anti-nausea medicine just to sleep. The next day it happened again: I was dizzy and motion sick, even while standing still.
I assumed the dizziness that plagued me for days was either from the newly diagnosed POTS or the necessary blood pressure medication. It took arguing with the cardiologist and a trial of a different medication (which didn’t work, caused my POTS to flare, and ruined a family vacation), to realize it wasn’t the medicine. My primary care doctor attributed it to allergies, and I started a daily regimen of antihistamines to no avail.
The dizziness continued to wax and wane for months with no explanation. I endured multiple doctor appointments, an MRI of my head, a consult with an ENT (ear, nose and throat) doctor, a dizzying test of my inner ear known as a VNG (videonystagmography), ongoing vestibular rehab therapy, a neurologist appointment, and finally a referral to a vestibular neurologist before getting a diagnosis.
This is the role mental health played in all of it.
Although I’m in a better spot than at onset, both the POTS and vestibular migraines truly exacerbated my anxiety. The long-term stress of the pandemic had already taken a toll on my mental health (as it has many others), but the out-of-control heart rate and dizziness were the final straw. Instead of being anxious periodically, I was anxious always.
The anxiety and POTS became intertwined, and the dizziness added confusion. For a while it was difficult to tell if my heart rate was elevated because I felt anxious, was experiencing a POTS episode, or as a result of my mysterious dizziness. Which illness came first?
It took weeks before I could separate the POTS symptoms from the anxiety symptoms. Once my doctor and I figured out the right blood pressure medication for me, the POTS symptoms were controlled. Yet, the pressure in my head and resulting motion sickness persisted, and the resulting anxiety remained my biggest challenge. It was months before my mental health returned to its baseline.
I knew something had to change for me to better control my stress and anxiety. It was up to me to learn to deal with my mental health in a way I hadn’t in the past. I went back to seeing a counselor who focuses on the mind-body connection, and I made major changes in my approach to mental health.
Every day I try to do something, even if just for five minutes, to calm my anxious mind. All the while, I’ve been chronicling my journey and working to create a community for others like me. I’m still a work-in-progress but am so much better than before—mentally and physically. The chaos of the storm has subsided and I’m excited for the next phase of reconstruction.
