This is a guide for people who may not know anything about endometriosis, but want to better support their employee with the disease. There is so much to cover when talking endo, but we're sticking to the basics that impact the person you work with on a daily basis. If you want more information about the illness, check out EndoFound's Endometriosis A-Z.
Relating to folks with chronic illnesses that you don't have can be intimidating. Kylie Gomez, writer and chronic illness advocate, puts it this way: "Work doesn't know how to deal with longer-term things. They know what to do when you need surgery and need to be out for a couple of weeks, but they don't know how to deal with you when it's something chronic." Endometriosis doesn't go away, even though the pain may lessen on a good day. For someone living with endo, having a trusted person at work to confide in can be immensely helpful.
What is it like to live with endometriosis?
One of the most difficult parts of having an invisible chronic illness like endometriosis is describing the pain. Doctors often try to help get around this by using the number system, meaning that they ask a patient to rank their pain from 1-10. The tricky part is that my 10 may not be the same as yours, so coming up with accurate descriptions of the pain of endometriosis is a real challenge.
It might be tempting to equate endometriosis pain with period cramps. This is a human impulse: draw comparisons to something we know about in order to better understand the unknown. Most of us with endo have had well-meaning people share that they, too, suffer from bad cramps and just wish they could stay home sometimes.
To be clear, endometriosis is not cramping. This illness causes lesions to grow in parts of the body and can result in a myriad of health complications including daily pain, infertility, and in rare cases, life-threatening complications. It is a life-long, incurable illness that takes an average of 7-10 years to diagnose due to a widespread lack of understanding of the key symptoms. Additionally, because endometriosis is associated with the female reproductive system, people with endo battle stigma and shame when discussing their circumstances.
You may be starting to see why seemingly simple tasks at work can be incredibly difficult for someone with endometriosis. In a retail or food service setting, for example, employees are often required to stand for long periods of time. An employee with endometriosis might be battling intense pain and fatigue and find that to be a real challenge. So how can you be a better friend to your coworkers with endometriosis? Here are some dos and don'ts to get you started.
What can I do to better support my employee/coworker with endometriosis?
DO: Research! If you don't have endo or love someone who does, do some digging to better inform yourself about the symptoms of the illness and the struggles that many endo patients face when seeking treatment. Make sure you understand that 'chronic' can often be synonymous with 'forever.'
DON'T: Forget that we're ill. Endo is an invisible illness, but it's always there. Please don't depend on us to remind you that we are sick - it can feel embarrassing, demoralizing, and exhausting to have to continually tell our coworkers that we are struggling. Of course we are not defined by endometriosis, but do your part to make sure that you remember the information we share about our illness the first time around.
"At [my previous employer], I went through five managers," Kylie told me. "I had to do a lot of education. It was hard to educate over and over about my illness, and eventually I ended up leaving."
DO: Work with HR to create space for employees to connect. A group or even a work-sponsored online space for folks living with chronic illness, mental illness, and disability can be hugely helpful. These kinds of groups are (of course) optional, but encouraging the creation of one of these safe places could benefit more than just your employees with endo.
When Kylie created this kind of group at her job, aptly named Chronically Chill, she found that many members had similar grievances. “We were still expected to meet all the same deadlines as everyone else even though [management] knew we weren't able-bodied,” Kylie said. “We were all struggling to depend on our managers to know when we were fatigued." Because of these conversations, Kylie was able to push her company to take these issues seriously.
DON'T: Be toxically positive. We don't want to be dealing with endo, but these are the cards we've got and we don't need to be happy about them to make you more comfortable. It's exhausting to have to listen to you remind us that "this too shall pass" when this disease is incurable.
DO: Check your assumptions. Office culture isn't designed for people with chronic illnesses or disabilities, and by and large retail, food service, and factory jobs are frustratingly ableist. Understand that we're trying to operate within a system that isn't supposed to work for us, and that timelines may need to be different to accommodate our health challenges. Work with HR to figure out how to make a plan to best support your employee when they need time off, extra breaks, or other accommodations.
DO: Remind us why we're valued. Do we do an extra good job at opening the store? Do you appreciate our presentations? Do we bring our sense of humor to meetings? Tell us why you're glad we're on the team, because it can be tough not to focus on the things we think we're doing poorly.
The bottom line is to listen when your employee shares with you. Remember that it is vulnerable to discuss health and pain, and that if your employee is opening up to you, they feel they can trust you. Being a manager is often about championing your employees' skills and abilities, so please do your part to be our health champion, too.
*Special thanks to Kylie Gomez for sharing her perspective. Kylie is an author and chronic illness advocate with a background in recruiting, diversity and inclusion, and leadership hiring. You can read her viral post on workplace culture and inaccessibility and stay tuned for her upcoming books.