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Endometriosis Is Costing Some Women Their Jobs

Dealing with this disease in the workplace can be difficult. Raising awareness is essential.
Courtney Johnston
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Courtney Johnston

I've written extensively about my experience with endometriosis, and there are millions of stories just like mine that can be found around the globe. But the real trouble with endometriosis is that we don't know enough about the disease to find an effective cure—and on top of that, it can be difficult to diagnose.

As a result, the physical and mental effects on women with or without an endo diagnosis can permeate every aspect of their lives. When endo begins to hinder your job performance, serious damage can be done.

"Endometriosis and other chronic health conditions can deeply impact a person's ability to maintain their performance and attendance at work," said Shaun Williams, M.D., a reproductive endocrinologist at Illume Fertility in Trumbull, Connecticut. "Needing to call out sick on a day they're experiencing extreme pain or needing to miss work hours to go to a doctor's appointment makes juggling work and health exceptionally difficult."

A 2021 study published in the Australian and New Zealand Journal of Obstetrics and Gynaecology (ANZJOG) found 1 in 7 Australian women with endometriosis lose their job due to their condition. Approximately 31 percent of women surveyed in this study noted they had been passed over for a promotion, while nearly two-thirds reported taking unpaid sick time to manage their symptoms.

Endometriosis is an invisible illness, meaning employers often don't realize the toll that chronic pain can take on employees who have the condition.

"Unfortunately, most employers do not provide adequate support or time off for those with chronic health challenges, which in turn adds to more stress to the employee as they struggle to balance it all," Williams said.

The unexpected impact of COVID-19

If there's a silver lining regarding endometriosis, it may be this: COVID-19 workplace changes seem to have a positive effect on women suffering from endometriosis. In the 2021 study, 8 out of 10 women reported that workplace changes as a result of COVID-19 made it easier to manage their endometriosis symptoms.

Some of the pandemic-related changes that helped women suffering from endo included more flexible time management, the ability to work remotely, 20-minute rest periods, more access to health care and mental health resources, and access to exercise classes and physical aids, such as heat packs.

"As a result of easier endometriosis management and flexible working arrangements, [the respondents] also felt more productive, with more than half indicating they were more productive as a result of COVID workplace changes," the study authors stated.

This relationship is mutually beneficial. Offering women better benefits and flexibility in the workplace helps ease endometriosis symptoms and helps increase productivity, which benefits the company.

Unfortunately, not all women have access to these changes, such as flexibility to work from home or additional sick leave. Still, these changes are a step in the right direction and could be used as a framework for companies to follow.

How can workplaces improve?

There's nothing easy about endometriosis, but there are ways employers can make it a little more manageable for women to deal with their endo symptoms while working. When asked what companies could do better to help women, survey respondents ranked these factors as "extremely important":

  • Offer better flexibility, time management allowances and/or the ability to work remotely, where applicable (63.7 percent)
  • Provide physical aids, such as heating pads, ergonomic chairs or cushions for sitting more comfortably (48 percent)
  • Access to better health care and medical resources (35.7 percent)
  • More practical support, such as help with home-care duties (16.6 percent)
  • Assistance for child care (11.4 percent)
The next steps for employers

Realistically, not all jobs can offer the same benefits and flexibility, so there isn't a "one size fits all" solution that employers can utilize to be more accommodating for employees with chronic conditions.

However, that doesn't mean there isn't more that workplaces can do. Listening to the solutions from survey respondents is a good first step: allow employees to work from home when possible, and for those who have to be in-office, provide healthcare resources, physical aids and more breaks throughout the day.

Just like other chronic conditions, endometriosis can severely impact your productivity, but talking to your employer or HR department may help you get access to the tools you need to better manage your symptoms.

I'm lucky. I've worked remotely since 2016 and it's been hugely beneficial to my endometriosis. I can work from bed during particularly painful episodes or work at night if I'm struggling to get through the day. I also have paid time off and access to health care and other medical resources. I'm also not a mother, so I don't have to juggle my own pain while raising another human.

But I've been on the other side, too, suffering through symptoms while having to stand, stock shelves or greet and assist customers. No matter your job, salary or background, you shouldn't have to live in fear of losing your job because of endometriosis—and you also shouldn't have to suffer through your workday in pain.

"This is what happens when there is a lack of education in society around women's health," said Sylvie Bee, a California-based sex and relationship coach at Sex and Sensibility Coaching who works with women suffering from endometriosis. "Most men have no idea what endometriosis is, and most women who don't have it don't know about it, either, and it's hard to take something seriously if you don't understand it."

While we can't expect every company to suddenly shift to better work conditions for women with endometriosis, we can continue to raise awareness.

Endo is so common that it's likely every person on this planet knows someone impacted by the condition: sisters, mothers, daughters, aunts, grandmothers, cousins, spouses, friends or co-workers. Getting the message out is the best way to demand change and shed light on a disease that takes so much from so many women.

"The more education there is about endometriosis and how debilitating it can be, the more people will be able to understand and, hopefully, empathize," Bee said.