“We often use illness to disparage a way of being, and identity to validate that same way of being. This is a false dichotomy … Many conditions are both illness and identity, but we can see one only when we obscure the other.” Andrew Solomon’s Far from the Tree

Elena Schwartz was born with rosehips planted in her midwestern heart, the sleeping seeds pressed firm against its septum. When she was 18, a sultry August stirred the orbs from slumber, and for three years, the seedlings sent roots through her muscles and green tendrils down her veins. On the day the first bud bloomed in her chest, an incandescent July, she rode her bicycle 50 miles in the gleaming, southern heat. The swiftness of her blood stained the petals crimson, and she slept for three weeks straight. When she woke, she turned her white wrists up to anyone who’d look. “Can’t you see the thorns grow sharp beneath my skin? Can’t you hear the roots drink my blood and my heart beat quick against the briers?” But no one could see, and she returned to her life with a rose blossom in her chest and a quiet grief on her lips.

Her Life Before

I met Elena during our first week of college. While I savored the viscous tempo of the Deep South, she flew through her life at double speed. Next to her, I moved in slow motion.

Elena was fiercely intelligent, unapologetically competitive and absolutely self-assured. She was salutatorian of her high school class and earned a full academic scholarship to college, where she graduated summa cum laude. She completed three marathons in three months during her senior year of high school, and when we left Waffle House at 2 a.m. on a Friday night, I knew she’d be running at dawn. She biked everywhere, wet hair streaming in her wake, and taught me the true and proper way to scream “Yea, Alabama!” at football games. If she wasn’t succeeding, she wasn’t trying hard enough.

I was intimidated by her confidence. Her father was a doctor, and she told me without hesitation that she would be a surgeon.

Elena’s Long Descent

In July 2014, two days after a 50-mile bike ride, Elena lost consciousness while standing for an X-ray of her spine.

Her thoughts gummed together in stringy phantasms, and she fought to force coherent words from her lips. The chiropractor worried she’d had a seizure, and by the time she arrived at the emergency room, she couldn’t remember her home address, her father’s birthday or her mother’s maiden name. For the next three days, she lived in a leaden haze, emerging only to crawl to the bathroom and drink pink lemonade.

Elena’s illness was one of relative scale. Her sleep was too long for the length of the night, the earth’s gravity too strong for her frame. Her arms were too heavy to lift from her body and the toilet too far from her bed. Her mind, mired in treacle, was too slow to speak lucidly, the world too fast for the weight between her eyes. Her head was too high above her shoulders, and her fingers too distant and small. She saw nothing real and felt nothing solid and heard nothing new and life’s colors pooled around her as she slept.

In her hometown, a cardiologist strapped Elena to a table and tilted her body upright. She held out seven long minutes before fainting.

Elena has postural orthostatic tachycardia syndrome, or POTS, which is a type of dysautonomia caused when the part of the nervous system responsible for unconscious functions fails to compensate for changes in position.[i]

When a person stands up, blood vessels throughout the body tighten to squeeze blood out of the limbs. When Elena stands up, her vessels don’t tighten enough, and blood pools in her feet. Her heart beats faster and faster, fighting to send enough blood to her organs, and when her brain demands more blood, she faints.

The defining feature of POTS is a heart rate that increases by 30 beats per minute when standing up, but people with POTS often have symptoms affecting every part of the body: lightheadedness, fainting, overwhelming fatigue, brain fog, difficulty finding words, short-term memory loss, numbness, headaches, pain, exercise intolerance, heat intolerance, abnormal sweating, temperature dysregulation, abdominal pain, nausea, vomiting, palpitations, chest pain, difficulty breathing, tinnitus, flushing and more.[ii]

In some sense, Elena was fortunate to be diagnosed so quickly. The average time from the onset of symptoms to diagnosis is six years, and 80 percent of people with dysautonomia are first misdiagnosed with a psychiatric condition.[iii] Most people with POTS are young women, named nervous, high-strung or difficult when they complain of a laundry list of vague symptoms.

There are no FDA-approved drugs for POTS, and although many patients improve with treatment, only about 20 percent of those diagnosed as teens are completely cured.[iv] Interventions focus on increasing blood volume, avoiding dehydration and improving the return of blood to the heart.[v]

Living in Shadow

Elena set out in her senior year of college with waist-high compression garments and a keg of Powerade Zero. The cardiologist told her that she would “grow out of it,” but in the meantime, the medicine he prescribed should work within six weeks.

Every morning at 7 a.m., her best friend appeared with coffee and turned on all the lights. She lured Elena out of bed, drove her to class and made sure she ate. Elena found that many simple tasks now made her sick — showering, eating large meals, driving, grocery shopping, cleaning — and she could hardly sit through classes without leaving to pee out the hundred ounces of Powerade that she drank every day. Many days she walked to class and immediately sprawled on the floor.

She read her body like a mystic reading tea leaves, trying to discern patterns in her symptoms. She was a seismologist, measuring her heart rate each morning to predict how she might feel that day, and a topographer, recording every hill and set of stairs on campus.

Her body was in chaos and her symptoms were capricious. If she canceled plans, her friends called her flaky; if she didn’t cancel, she paid the consequence in herself for days after: Enjoy today, suffer tomorrow. From my perspective, Elena just disappeared, and I was too caught up in my own graduate school interviews even to notice. Only her most persistent friends stayed in contact.

The things inside her that made her Elena were slipping away. Perfectionist, overachiever, type-A marathon runner. She wondered what would be left within her when all these things were gone and cried every time she saw someone out for a run.

She felt her dreams falling through her fingers, but clenching her fists tighter didn’t trap them in her hands. How could she be a surgeon when she could barely stand for seven minutes? For the first time in her life, trying harder wasn’t working. She canceled her medical school interviews and instead applied to graduate school.

Leaving No Stone Unturned

At her first interview, Elena politely excused herself and lay down on the bathroom floor. The next fall, she enrolled in a Ph.D. program in biochemistry at a top research university. She tried her best to keep up, but her new mentors didn’t know her, and because she didn’t look sick, they assumed she was lazy.

But laziness is a privilege of the healthy, and she worked whenever and however she could. She tried propping her feet up to work at her lab bench, but when she was told it violated fire code, she was too tired to fight. She needed to advocate for herself, but she was exhausted and preferred to sleep.

When I asked Elena why she didn’t reach out to her school’s disability office, she told me that, at the time, she didn’t think her chronic illness counted as a disability. In the Johns Hopkins University School of Medicine, only about 2 percent of students register with student disability services[vi] — despite the fact that at least 10 percent of adults in the United States have some sort of disability or chronic illness.[vii] And while there are straightforward accommodations for promoting academic success, the majority of Elena’s graduate program would be spent in the lab, where she was expected to pacify her research mentor by performing experiments at all hours of the day and night.

Elena’s situation was unsustainable. She took a medical leave of absence to begin an intensive treatment program. When she realized her condition was permanent, she abandoned all thoughts of graduate or medical school and completed a second bachelor’s degree in computer science.

The Burden of Chronic Illness

I’m sure Elena is a great programmer, because Elena is great at everything she does.

I wonder, though, why the culture of graduate school demands that even healthy, bright-eyed students work until they lose themselves in competition and perfectionism and striving for achievement — to what end? Perhaps Elena could have succeeded in a more supportive graduate program, but ultimately, it is biomedical science that will suffer the loss of her talent and the talent of other students with chronic illnesses and disabilities.

Elena is so disenchanted with the medical system that she now avoids going to the doctor, and ironically, this frustration would have made her an excellent physician.

Sarah Warren, a professor in audiology at the University of Memphis, told me that having POTS has made her a better health care practitioner, a better professor and a better researcher. “I became more understanding and empathetic with my patients. I listened better and took a little more time before coming to conclusions or making judgments … I am passionate that nobody fall through the cracks and that people receive a prompt diagnosis and intervention.”

Much like Elena, Sarah developed strange symptoms while completing her degree. Her work policy required her to go to the emergency room if she fainted, so she learned to hide in a private bathroom until her symptoms passed.

Many students told me that they found ways to manage their symptoms before they were even diagnosed with POTS. One student rested her head between her knees in the bathroom and on a wall during lectures; another sat cross-legged or propped her feet up in front of her. Hannah, a speech-language pathologist, regrets that she didn’t ask to sit during patient evaluations or to take the elevator instead of “just” climbing the stairs.

Developing a chronic illness can feel like dying a thousand tiny deaths as every aspect of a well-planned future comes into question. One student grieved when she realized that she wouldn’t be able to achieve everything that an imagined, healthy version of herself could accomplish. Another grappled with comparing her performance to that of her classmates.

Many are also frustrated when they try (and fail) to explain what it’s like to have POTS to a healthy person. “I’m still tired all of the time, and I still find that hard to explain to people who laugh and say, ‘That’s just part of aging!’” Sarah told me. The fallout is a collection of strange metaphors, as though having a chronic illness is actually like running out of fictional spoons or fighting a very courageous and ultimately inspiring battle between the quarrelsome regiments of your body.

A New and Beautiful Normal

When I was a child, my mother, a counselor, taught me a game designed to foster empathy. We contrived fantastical excuses for people whose behaviors seemed indefensible. “See that car that just sped by? A woman is literally giving birth to triplets in the backseat, right now.” “The overly chatty gas station attendant? His family died last year, and he’s all alone.”

I still play this game when I walk through the halls of the hospital. How often do I look up from my own life long enough to really see people?

I’m sure when doctors see Elena, they see their own failures. She’s the broken girl who can’t be fixed, the promising young student with the shattered dreams.

But when I talk to Elena, she says she’s happier away from the life she once wanted. She meditates daily and foxtrots with her husband on Friday nights. She does what brings her joy instead of what others think she should be doing. She debugs code on her couch with her dog, and when she calls herself “zen,” I struggle to reconcile that image with the person I once knew.

Elena is stuck with her body, but her adventure has made her strong. She shaped an impossible situation into a new, worthwhile life, and her condition is now as much identity as it is illness.

She can never go back to the before, forever carrying the invisible traces of her sickness on her body like scars etched in rocks by the sea. Her illness, a beautiful epiphyte, blooms hidden in her chest, its tearstained blossoms unfurling in triumph.

Author’s note: I am deeply grateful to Elena for her friendship, for her encouragement and for allowing me to tell her story here. You can read more about her early illness in her memoir, Chasing Normal. She’s since realized that her happy ending wasn’t the one she expected, and hopes to update the book to reflect her newfound peace.

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References

[i] Dysautonomia International

[ii] The Dysautonomia Project: Understanding Autonomic Nervous System Disorders for Physicians and Patients

[iii] Survey by Dysautonomia International

[iv] Outcomes of Adolescent-Onset Postural Orthostatic Tachycardia Syndrome

[v] Adolescent fatigue, POTS, and recovery: a guide for clinicians

[vi] Personal communication with Cathy Will

[vii] 2017 Disability Statistics Annual Report

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