A Back-to-School (or Work) Guide to Endometriosis

People with endometriosis need tools to navigate both school and workspaces. Our experts share their best tips.

Photo of Black student wearing a face mask sitting in classroom on her phone
There is no shame in talking about endometriosis. You deserve to get the most out of school and work. Shutterstock

As the school year starts and many workplaces begin in-person operations, those of us with endometriosis have to stick together.

Endometriosis is a chronic reproductive health condition that affects 1 in 10 people with a uterus and can cause chronic pain, fatigue, organ dysfunction, and infertility.

Needless to say, people with endometriosis are incredibly strong, but navigating work and school can be challenging thanks to systemic ableism.

That’s where we can help.

Who are we? Caroline is a journalist and a J.D. who has endometriosis. Lauren, the founder of Endo Black—an organization focused on advocating for African American women and women of color with endometriosis—also has endometriosis. Together, we compiled our best tips and tricks for asking for the accommodations you deserve; balancing work, school, and chronic illness; and making sure you’re taking care of yourself and your body.

We’ve done our fair share of managing school and work with endometriosis: Between the two of us, we’ve run a nonprofit, earned a law degree, worked at the American Civil Liberties Union, worked a full-time job as a lead teacher, operated as a board member for several organizations, and spent time as an active member of Alpha Kappa Alpha.

People with endometriosis need tools to navigate both school and workspaces—according to an article by Swiss researchers in the medical journal BMJ Open, “about 40 percent of women with endometriosis report impaired career growth due to endometriosis, and about 50 percent experience a decreased ability to work due to their chronic disease.”

Here’s what we’ve learned about how you can manage endometriosis as you go back to school, work, or both.

If you’re going back to school

Meet with your professors individually to speak with them about your endometriosis. Try to find students who have taken your classes in previous years and get a sense of what that professor is like about absences and accommodations.

You are legally entitled to accommodations that help you manage your coursework, thanks to the Americans With Disabilities Act. Remember that when you ask for accommodations you’re not inconveniencing anyone—it’s the job of the people in your school’s disability services office to make education accessible.

But we know firsthand it’s not always that easy. Self-advocacy can be more complicated than just asking for what you want, especially if you’re marginalized in other ways. If you need help working with your school’s dean or disability services office, try to identify a professor or staff member who can be an ally—someone who could advise you, and even stand up for you on your behalf.

Do your homework, and go in with a cursory understanding of what kind of accommodations your school has offered other students and what the ADA should allow. Typically, the parameters are that a “reasonable accommodation” is something that allows a student to manage all the central functions of their classwork without creating a threat or burden. This can include things like remote learning, modified attendance schedules, or extra breaks during class.

Read your student handbook. Spend time becoming well-versed in it so that you’re able to advocate for yourself.

If you aren’t able to participate in class, inform your instructor ahead of time. If you’re up for it, ask how you can participate in class virtually, and be proactive about setting a game plan to make up for missed work.

Sitting in the front of your class or meetings is a good way to get ahead and stay attentive. Sitting closer to the corners or the exit might also be a good idea in case you have to excuse yourself.

If you’re going back to work

Forge a relationship with your co-workers in the human resources department. You’ll be working closely with HR, so it’s a good idea to connect with them. All of the same ADA accommodations that apply to students also apply to workers.

Take time to meet with your direct manager to share about your endometriosis. When you have a chronic condition or disability, it can feel scary to talk to your supervisor about it, but building a strong relationship with your manager or boss from the outset is important to ensure they know how best to support you.

Create an “endo kit” that includes all of your tools and essentials to manage your health while at work. If you have a desk, keeping items there as a safety net will likely come in handy in the future.

Some of our favorites are a heating pad, a TENS machine, CBD capsules, suppositories and lotion, pain medication, instant ice packs, tea essentials, extra period care items, and anti-anxiety medication.

Be mindful of what you eat for lunch. You may need to pack a lunch or extra snacks that will help you get through the day.

If you’re feeling stressed, try to take five minutes away from your desk to gather your thoughts or get some fresh air. Movement can help ease tension from your body that can cause your pain to build. As cliche as it sounds, taking a few moments and counting to ten while taking deep breaths can help you manage stress effectively.

If you feel guilt or shame about calling out sick, try to remember that you live with pain and illness every single day; how you feel on an average day would likely warrant a sick day for your able-bodied colleagues. For someone with endometriosis or a chronic illness to call out sick, things typically have to be really bad, so remind yourself that you’re strong and capable and that needing sick days does not change that.

Whether you’re going back to school or work, the pandemic might actually be your friend. If your school or workplace is remote to accommodate COVID-19 safety measures, use that to your advantage. If a school administrator or manager at work is arguing that a remote option isn’t feasible, remind them that if it was feasible to accommodate social distancing, it’s feasible as a disability accommodation. Period.

Always remember: Communication is key. And that can be difficult, especially when reproductive health and menstruation are so stigmatized. Asking for accommodations, taking sick days, managing a commute—all of these prove challenging with any chronic illness, especially one like endometriosis.

But there is no shame in talking about endometriosis. There is nothing wrong or inappropriate about talking about your period. You deserve to get the most out of school and work.