In a previous life, I was a 1920s farmwife.
I don’t mean reincarnation—I mean as the education director of a living historical farm, I spent most of my days in a 1920s costume leading children through activities. While taking “sitting breaks” at my desk, I would organize our special events, supervise staff, and write exhibitions. If you’re an endo patient, do you remember where you were the day after a doctor first said the words “suspected endometriosis”? For me, I was leading a sheep-shearing event for hundreds of guests while worrying that the massive ovarian cyst taking over my abdomen would rupture in the middle of it all. There were so many close calls in my pre-pandemic life: the sinking feeling I had every time a colleague asked me to carry program supplies, the pain I felt when a child hugged me around the waist, the shame I felt when volunteers saw me “plugged in” to my heating pads. Though I had worked hard to establish myself in museums, every time my illness affected my ability to get my job done, I wondered if it was time to hang up my farm hat.
Ultimately, the pandemic made that career decision for me. When my position was eliminated due to budget cuts, I made the decision not to apply for in-person museum jobs, and instead take advantage of the opportunity to work for an all-remote organization that consulted for museum clients. As I settled into a work-from-home life, I realized my disease was not as severe as I thought it was, but that the physicality of my job aggravated my pain. In hindsight, everything I did in the “before times”—getting up early, driving, sitting in traffic—took away my metaphorical “spoons.” Now that work-from-home is the norm, I wonder why I spent so much of my working life trying to compensate for a flawed body in order to participate in an able-bodied world, instead of trying to adjust my working environment to what worked for my body.
Unfortunately, my experience has been far from unique.
Some employers had work from home options before the pandemic.
While working from home was verboten in my previous place of employment, other employers across the world were able to provide work-from-home as a reasonable accommodation even pre-pandemic. Colleen, who works as a Senior Housing Specialist for a social work program in the UK, had worked from home once a week before the first lockdown. During the pandemic, she was required to be onsite. However, because shifts were staggered, she would work half the day at home, and half the day from her office. While Colleen’s company has now adjusted policy and are pressuring employees to work onsite,
not all companies allowed work-from-home, even on a limited basis, pre-pandemic. Jenny, who works as a communication specialist for a New Jersey nonprofit, said “Pre-pandemic I don’t even think it was an option, to be honest.” Her organization did not specifically prohibit work-from-home, but it was simply never discussed. Across the country, Hannah from Washington, who works in client operations for a financial firm, also worked “from the office exclusively—never from home.”
The pandemic changed how some organizations viewed working from home—even when planning for life after the pandemic. Jenny said, “I think working at home from March through August sort of ‘proved’ that we could all be productive and get work done at home if needed.” Since her organization went back to the office in August, she has requested to work from home occasionally during flare-ups and around surgery. Jenny found that her work has been very supportive, and having access to a VPN login—something that wasn’t common in her organization pre-pandemic—has been a lifesaver.
Working from home not only improved patients’ symptoms, but helped them be more productive at work.
Like me, Hannah the financial specialist factored her pandemic experience of working from home into her decision during a job search. Hannah hadn’t experienced any deliberating endo symptoms before the pandemic—but since April of 2020, she has developed severe symptoms and had two surgeries. Not only did working from home increase her comfort level due to the flexibility she has during flare-ups, but it also increased her productivity. Hannah said about her surgeries, “I would have had to take off a month if I wasn't working from home, but since I could work on my couch with my heat and ice packs, I only had to take off two weeks.”
Although Hannah’s job was accommodating and understanding, she eventually started a new job— something made possible only by the pandemic. Hannah’s new job is 100% remote, indefinitely, and based in another state where she had connections. Hannah said, “In the past, they never would have offered it to someone remote, but during the pandemic they have realized that this role does not need to be onsite, even post-pandemic.” While there were a number of reasons Hannah took her new job, being able to work from home indefinitely was a major reason. For the organizations Hannah has worked with this year, work-from-home policies were not only more humane during a global crisis, but made good business sense. Despite facing a health condition, Hannah was able to be productive at home—and ultimately realized that if it was possible to do her job effectively at home, she could find a new company that allowed this.
Unfortunately, Colleen in the UK is facing pressure to be back in the office more often. While her frontline manager has approved her requests for extended work from home, leadership at her organization is placing pressure on everyone to return to the office. But Colleen found that work-from-home not only improved her work-life balance, but helped with her pain management. “I am hopeful that I will be able to work from home more in the future,” she said, “as it really helped with my symptoms.”
The pandemic has changed the way both people with endo and the general public thinks about work and health.
For people with chronic conditions, thinking about how to balance living a happy and productive life while also minimizing pain and illness is a calculation we make every day, even before the pandemic. But for the general public, and even for some endo patients themselves, the pandemic has been a wake-up call on the value the working world has placed on health and wellness.
For Jenny, the nonprofit communications specialist in New Jersey, working from home during the pandemic while dealing with worsening endo systems changed her overall approach to health and work. “I’ve always come from the mindset that you’re supposed to push through because you have to go to work and just suck up the pain,” she said. “Now I feel like I need to prioritize my health over work and since I know I can get things done remotely, I want to make sure I have that option in the future.” After recovering from surgeries from the comfort of her home, Hannah said of her experience, “It has made me never want to go back to in-person work again!”
I heard over and over again when speaking to people with endo that work from home has been a “lifesaver.” For me, working from home has not only improved my physical wellbeing, but my mental and emotional health, as I’ve had more energy to spend on my family and creative hobbies instead of dealing with the day-to-day of commuting to work. Like many of the people I spoke to, I can never imagine living a life where I would be expected to commute to an office on a daily basis again, even though I never imagined myself working from home before.
Now that I know that I can work from home, my whole perception of work, health, and life balance is altered. During the pandemic, companies that adopted generous work-from-home policies made the decision to prioritize the health of all their employees, not just those with chronic medical conditions (although the decision had extra ramifications for those with chronic conditions). Societally, great portions of the world decided—even if only for a few weeks at the beginning of the pandemic—that health was worth changes in the way business operated. As the pandemic starts coming to an end with vaccinations, we will start seeing which health-focused policies—such as the increased availability of paid sick time, less corporate encouragement of employees coming into the office while sick, and flexible work schedules—stick. I encourage all people with chronic conditions, but specifically people with endo, to take lessons from how their body and work has fared during this time, and advocate for themselves whenever possible. If your company learned during the pandemic that work from home is possible, and if you felt that work from home improved your health, now is the time to start making a case for a flexible schedule. There may never be an opportunity like this one, so we need to seize the moment before it Zooms by.
