At home during the pandemic, she was the healthiest she'd been in years. Then she was called back to work.
One of Rachel Hinken's favorite things to do after work is bust out her keytar and give private concerts at her home in Copiague, N.Y. It doesn't matter that the only audience members in attendance are her son, Oliver, 6, and her two pet bunnies, Penny and Snowy, both 8 - Hinken gets into it. Her bubblegum-pink hair swings around as she describes it.
"I wanted to be a musician," Hinken says. "But I couldn't. It's just too exhausting."
Her impromptu shows happen far less often now than they did a year ago.
Hinken, 36, has been living with postural orthostatic tachycardia syndrome (POTS) for 12 years. In 2020, she was temporarily furloughed from her job at a care program for elderly adults with Alzheimer's and dementia during the coronavirus pandemic. She continued to receive 10 hours' worth of pay per week despite doing just one hour of virtual interaction with seniors, and also collected unemployment insurance.
For nearly a year, she didn't have to drive to and from work or walk much farther than the distance between rooms - and as a result, she had more waking hours to spend with Oliver and her boyfriend, Jonathan Rainone, who's Oliver's dad.
Now that she's back on the job, she's been lucky to spend more than an hour or two with them in the late afternoons after Oliver gets home from summer camp before crashing for the night.
"So many of my friends are in bands, and they're like, 'Hey, come to this!'" Hinken says. "I'm just like, 'I'm really sorry. I love you guys. You guys are great musicians. But it's just so hard.'"
The 13 months she spent home from work during the pandemic were some of the healthiest she's enjoyed in her adult life. Now that the program she works for has fully reopened, a question has loomed over her return, as it has for many with disabilities and chronic illnesses: What does she value more, her income or her health?
When Hinken walks you through all of her diagnoses and what they mean, it takes several minutes. POTS, a form of dysautonomia (or autonomic nervous-system disorder), makes it difficult for a person's body to regulate its temperature, heart rate, blood pressure or sweat release while standing; hyperadrenergic or "hyper" POTS, the form Hinken has, is accompanied by elevated levels of stress hormones. POTS can also be accompanied by such symptoms as lightheadedness, fatigue, headaches, brain fog, blurry vision, tremors, nausea and palpitations.
After her diagnosis in 2009, Hinken had to drop out of community college, where she was studying early-childhood education. In the following years, she was diagnosed with two heart conditions: AVNRT, which results from an extra pathway in the heart, and mitral valve disease, in which a major valve doesn't work properly. Both can result in fatigue and shortness of breath.
Conditions like Hinken's make it difficult to have a full-time job. A stint working at a retail chain - where Hinken couldn't rest as needed, couldn't control the temperature of the environment and couldn't carry a water bottle to offset her tendency to sweat profusely - ended up a short one.
In 2019, she began working 20 hours a week over five days as a program assistant at the care center for seniors. Each day, she sat with elderly clients as they listened to music; she danced with them, colored with them, held their hands. "I don't want to lose this job, ever," she says. "It's just so nice to have something you can do and feel like a productive member of society, like everyone else."
But in the short time she worked at the care center before the pandemic, Hinken came down with strep, laryngitis and bronchitis - on top of a condition that causes her to feel exhausted much of the time already. "This is the kind of thing where you go to bed, you don't wake up feeling rested, you're still tired," Hinken says.
Now that employees across the United States are returning to in-person work en masse, people with disabilities and chronic illnesses have seen remote options that made life easier begin to disappear. Many feel frustrated and invisible as a result. Some have quit.
Certainly, to be in Hinken's position - having a job and keeping it over the course of the pandemic - is to be in a relatively fortunate place. Dara Baldwin, director of national policy for the Center for Disability Rights, points out that the unemployment rate among Americans with disabilities was higher than that of the rest of the adult population to begin with, before it spiked for everyone in 2020. When Baldwin gets asked about accommodations for workers with disabilities, she's always quick to point out that "those are privileged disabled people usually."
Still, the challenges are real, and Hinken's return to work has been bittersweet. At first, she and the other program assistants at the center were summoned back two days per week. Hinken was overjoyed to see the seniors she'd missed seeing in person - though some of them, she could tell, had been disadvantaged by the year away. "Some of them don't talk anymore, when they used to talk before the pandemic. Now, they just kind of, like, wander around," she says.
Hinken loved the light schedule, and she began to dread the imminent return to a full workweek. "I had all these days off in a row, and I could recuperate from working and it was fine," she says.
It took her some time to muster the courage to ask for a permanent change. "I was very scared. Like, 'What do I do if they tell me they cannot accommodate me?' I'd be stuck at five days a week again," Hinken remembers. Would she quit and begin collecting disability insurance instead, as she had for years after her diagnosis? She had hated not working. "So in my head, I had a lot of thoughts."
Curt Decker, the executive director of the National Disability Rights Network, says a dilemma like Hinken's comes down to "a question of reasonable accommodation," the central requirement of the Americans With Disabilities Act. It's up to each employer and employee, Decker says, to work out an agreement as to what accommodations are actually required to ensure that the employee can fulfill the essential functions of their job. In a case like Hinken's, Decker says, "the employer does have the ability to say, listen, though, I need you here to actually help these patients." But his hope, he says, is that the employer might also entertain the idea of assigning someone who couldn't work in-person each day more remote-friendly tasks, like office administration or paperwork.
When Hinken finally asked for a new, pared-back schedule, her employer offered her one: in-person work, three days per week. Hinken gratefully accepted.
The reduction in work, Hinken says, has helped her regain some control over her energy levels. And, crucially, she hasn't gotten sick. Still, it's a trade-off. Hinken takes home $500 less per month than she did before the pandemic - $6,000 less per year. For her, that means eliminating such services as DoorDash and Instacart from her budget, and sometimes adding energy-sucking chores such as cooking, grocery shopping and picking up takeout.
For now, the sacrifice seems worth it. Sometimes, though, Hinken wishes that she didn't have to make it in the first place. "I don't like to ask for accommodations, because I want to be treated as if I'm a normal person, just like everyone else," Hinken says. "However, my body doesn't treat me the same way as everyone else's."
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