POTS Is an Illness Causing Fatigue, Rapid Heartbeat, and Nausea—Here's What It's Like to Live With It
"Other people don't see the pain of existing in this body," says one woman who lives with this chronic invisible illness.
This article is part of Health's series, Life Interrupted: Living With an Invisible Illness. Each month, one women will share what it's like to appear healthy on the outside while navigating daily life with a serious physical or mental health condition.
Sitting on the subway is my opportunity to force my mind out of a state of panic. I can't control what's happening to my body, so I attempt to distract my mind with calming mantras. You've been here before and didn't pass out. Count your inhale and your exhale. I am safe, I am calm.
I don't feel safe or calm because the groundwork functioning of my body is unregulated. I live with a condition called Postural Orthostatic Tachycardia Syndrome (POTS), a type of dysautonomia, or dysfunction of the autonomic nervous system. Its most notable symptoms are irregular heart rate and blood pressure that make me dizzy and light-headed. It's similar to the feeling of when you stand up too quickly and feel woozy, only the woozy sensation is sustained. I often remind myself of how lucky I am that I've never completely passed out like some people with POTS do on a regular basis.
Since being diagnosed two years ago, no doctor has been able to tell me what caused my development of POTS or how the symptoms may develop over time. Along with a steroid medication and a high-sodium diet, social coping mechanisms are the pillars of my treatment plan.
As we pull up to Queensboro Plaza, an older man with a cane gets on the train. In a moment of panic I realize there are no available seats for him. Luckily a kind construction worker stands up to let the older man sit.
I scan the rest of the subway car to see if anyone is judging me for taking up a seat. I don't see any looming eyes on me, but I never stop looking for them. I often feel shame about the discrepancy between my external presentation of a young twentysomething and my reality of living with chronic illness. My outward appearance is the Snow White to the haggard evil queen that is my real physiology. It's a confusing reality, and I've coped by labeling my body as a failure and my outward appearance as the potential I can't fulfill. Count your inhale and exhale, I remind myself.
Once the subway pulls up to 54th Street, I wait for the train to stop before I stand up. Any jostle from the deceleration of the train could throw off my balance enough to send my butt to the crusty floor. I'm always relieved to get to this station because it has a long escalator that's the equivalent of six flights of stairs. Most of my fellow subway riders walk the escalator to get to their destination faster. I play with my phone for a visible excuse to not be doing the same. For unwell people like me, escalators are like the staircase version of a hug from God.
As my feet hit the pavement of the sidewalk, I try to walk at a pace that blends into the hustle of the crowd. Some days, I let people pass by me as I make my way like a baby deer to my destination. But right now, I need to start morphing into her. She's able-bodied, charismatic, and energetic. I try to be this person that I think people see when they look at me. Other people don't see illness, pain, and the labor of existing in this body. I'd rather be who I appear to be. I make it my mission to fake it so everyone, including myself, can bask in the comfort of my illusion. This requires me to suppress my reality through an effortful conversation between me and her.
"I'm so fatigued."
You are fine, keep up your pace.
"I don't know if I can lead a group of people right now."
They are depending on you. Be professional.
"I feel so sick."
It's not about how you feel, it's about how you make them feel.
To others, I am the lady in Lululemon standing in front of them teaching the ab-burning hundred exercise and talking about the benefits of having strong glutes. I'm a Pilates instructor at a high-end national fitness chain. After teaching for three years, my reputation as an instructor has attracted supermodels and action movie stars, and they come to my class weekly. I look trim and strong, but today I am not sure I'm healthy enough to make it through my own class.
As I step through the front doors of the gym and breathe in the fresh scent of eucalyptus, I immediately look for a bench. Being vertical for any extended period of time allows blood to pool in my legs, which stunts the amount of blood pumped back up to my heart. With my heartbeat racing to compensate, this seated position takes the edge off a miserable cocktail of nausea.
A regular student of mine walks by, and I make an effort to appear to be her.
Like a verbal high-kick, I call out, "Hey, Mark, I'll see you in class!" He smiles, and I wonder if this charade is worth the depletion of energy it costs me.
It's seven minutes until the class starts, and I need to make my way to the locker room. Injecting myself with a dose of mind-over-matter, my feet meet the floor with a hesitant trust in gravity. Once I get to the locker room, I make a familiar beeline for the mouthwash by the quartz sinks--a ritual for good measure in managing my nausea. I hold a gentle smile on my face while avoiding eye contact with the ladies I pass as a median balance between me and her.
Once I cross the threshold into the yoga studio, I'm fully her. I squeeze a magnetic glimmer into my eyes and throw my shoulders back to assume the erect posture of health.
Her authoritative voice booms as I address the room. "Does anyone have injuries or any other physical limitations I should know about before we start class?".
A few hands go up reporting a sore knee from a skiing trip, a stubbed toe from a stiletto gone wrong, and a student saying that if her face looks a little green, it's from a new treatment by her esthetician. I muster a validating smile for each of them and express my gratitude for their disclosure.
I know how difficult it is for a person to share the intimacies of their health, so I cherish the trust my students have in me. I've stopped sharing anything about my own health with most people, even my closest loved ones. With invisible illness comes the burden of not being believed. I was lucky to be diagnosed within six months of the onset of my symptoms while the average wait time to get properly diagnosed with POTS is six years.
With the majority of POTS patients being women under 35 who were otherwise healthy, many of us have experienced the clinical attitude of "you must be a hysterical woman" when seeking medical attention. Before I was diagnosed, I had a doctor demonstrate how gravity works to excuse my symptoms. The landscape of my personal relationships also changed substantially in the first year of becoming sick. I learned some people will avoid talking about illness at any cost when some life-long friendships turned to radio silence.
The obscurity and complexity of POTS also caused loved ones to feel confused, so they would re-diagnose me with something they are familiar with. After endless doctors appointments and labs confirming my diagnosis, a family member suggested out of left-field that actually my problem was an eating disorder-—unable to believe that the diagnosis I told her was real. These experiences left me believing it would be easier to mostly keep my illness to myself, no matter how sick I felt.
I approach each student who reported an ailment to discuss potential modifications during class. The journey to each individual's mat costs me energy I don't have to spare.
It's not about you, it's about them. Maintain your grace, I hear from her.
I stride to the side of the room until the exact start time of class. I don't want to be front and center any longer than I have to for fear they will see the weakened muscles and slumped spinal alignment that my industry-required spandex fitness costume can't disguise.
I walk to the front of the room and announce, "We will begin standing." As 45 bodies rise to stand together, I think about how much they might take the ability to stand for granted. For them, it's just the beginning of their workout; for me, there are days when standing is my maximum physical exertion.
In fact I've been having a particularly bad flare recently, and it's hard for me to stay standing for the 45 minute "blast your abs into shape" class. Midway through the class as we complete a side-body sequence, it is time to switch sides. My heart races to pump blood back into my head to clear my increasing brain fog. My pounding pulse can't work fast enough, and I can't remember what I just taught. How will I repeat the sequence on the other side? I ruminate and panic. I'm on the verge of being discovered as an incapable fraud.
Don't drop your smile and keep it together, I hear from her.
Scanning the room, I position myself behind a strong Pilates practitioner. This student comes every week, and I know I can rely on her to remember the sequence. While watching her physical cues, I announce to the room where to position their bodies next.
There's a slight lag in my pacing, but I disguise the delay by correcting individual students' alignment. I maintain my authority by tilting a student in the back corner's hips to stack them properly. All of the students nearby also adjust themselves after they see the correction.
I make it through teaching the class like I always do. I've become a master at keeping my symptoms from drawing any attention. Thanks to my metamorphosis into her, I am complimented by sweaty, smiling faces. I feel proud of how invisible I can make my invisible illness.
Melissa approaches me in a crop top so yellow, it might glow in the dark. She's a regular student, standing out to me with her compulsive glances in the mirror throughout class.
"You look great," she comments, "Have you been doing more arm workouts?"
I'm flattered and mortified. It's confusing that the sicker I am, the more I fit into her prototype of health. On one hand, I am assured of my convincing portrayal of her; on the other hand, I want to take this opportunity to shatter the one-sided mirror of how she measures health.
I want to clarify, "I'm sick. I've lost weight, my appetite, and confidence. Please don't idolize an unhealthy body."
Don't say too much, I'm warned by her.
Instead I blush and simply say, "No, I haven't been doing more arm workouts".
Her face contorts with disappointment, as if she still can't find the right tips and tricks to make her body the personification of health. I want to tell her that measuring health by appearance is a myth.
When I started feeling sick on a regular basis, I came to a point where I had to decide to either push through everyday life or give up on my dreams for the future. I promised myself I wouldn't live like a sick person. That mentality helped me strive through the belly of my illness at a time when moving into my parents' basement and living under their care seemed like a real possibility. But the promise I made to myself also imposed a sense of shame—that it was unacceptable for my body to be chronically ill.
For fitness instructors, there is an implication that our appearance is the equivalent of a business card. In too many instances, the world of fitness reinforces the belief that we can measure health by the superficial presentation of weight, muscles, and bouncy hair. My waist measured in inches doesn't account for the faltering of my autonomic nervous system.
There's been incredible enlightenment about the invisible struggle of mental health, and physical health deserves the same ventilating grace. We cannot see health.
After class I take my time strolling back to the subway station. The rumble of the subway car approaching the platform soothes me like a lullaby. I'm relieved I made it through another class where my body held up long enough to make a meaningful contribution to my students' day.
Because rush hour is over, I have my choice of seats in the car. There's no such thing as a clean seat in New York City, but I choose a spot with the least amount of gum stuck under it I fumble through my Mary Poppins purse to pull out a salt pill I am overdue for. With a swig and a swallow, I wash her away for now.
As the train gains momentum, I think about the nap in store for me back in Queens. For now, I'll keep counting my inhale and exhales.
Rita Maureen Thompson is a national board- and Mayo Clinic-certified health and wellness coach, Pilates instructor, and yoga instructor.
If you have a story to share about living with an invisible illness, email us at firstname.lastname@example.org
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