Living with endometriosis and its associated health challenges was not a part of my college plan. I never would have imagined that planning my daily schedule around bathroom breaks would be a necessity, or that spending many weekend nights curled up in my twin XL bed with a heating pad, grain-free churro chips, and Netflix would become a cherished ritual. Yet, as anyone with endo can likely attest, this disease and its cronies—in my case, mainly interstitial cystitis, pelvic floor dysfunction, and POTS—require rethinking, adapting to and managing life in a whole new way.
For college students already learning a new lifestyle, adding the challenge of adapting to life with a chronic illness is not only extremely difficult, but also isolating. While everyone else seems to be functioning fine on little sleep, going to parties, eating junk food at all hours, having normal dating lives, and generally keeping up with obligations without obvious difficulty, living with a chronic illness in this environment can feel like you’re operating on an entirely different playing field from your peers. In short: managing chronic illness while in college is a hard, often lonely journey. And living with endometriosis, a disease so hushed, ignored, and misunderstood, comes with its own set of daunting battles.
But for those living with endo while in college: you’re not alone, and there are ways to find support and resources. While everyone’s experience is different, here are a few tips and reflections on managing endo at school that have been important for me.
Register for the Accommodations You Need—and Use Them!
Registering with my school’s office for accessibility remains one of the most important steps I’ve taken to prioritize my health while in college. Before even receiving my endometriosis diagnosis partway through my junior year, I had already registered with the accessibility office due to my various conditions and symptoms which, though unbeknownst to me at the time, were related to endometriosis. These, as mentioned above, included interstitial cystitis, pelvic floor dysfunction, and POTS, all of which rapidly developed during my time in college and made school exceedingly difficult. While I had formal diagnoses and a letter from my doctor to confirm the need for accommodations, my school’s office does grant temporary accommodations without formal diagnosis from a healthcare provider. For instance, my school offers accommodations for painful menstruation even without an endometriosis diagnosis, a fact I wish I had known sooner. Depending on the school, if you suspect you have endometriosis but are awaiting diagnosis, it is still worthwhile to seek out accessibility help.
My accommodations spanned both residential life on campus and academics. On the housing side, I was given a single room with an ensuite bathroom, which felt important for my symptom management. For academics, accommodations included reasonable extensions on assignments during flare-ups, the ability to miss classes for doctor’s appointments or on particularly difficult pain days, and the freedom to take bathroom breaks as needed during classes and exams. Having these accommodations formally granted by the office meant that so long as I communicated with my professors, I would receive them when needed. All this meant was letting a professor know that I was having a flare-up (I was not required to reveal any health information thanks to HIPAA) and asking for what I needed. In a sense, having registered for accommodations gave these requests a legitimacy that likely made my professors feel more comfortable with being flexible, and by extension made me feel more comfortable asking them for help. I was pleasantly surprised to find all of my professors more than happy to accommodate, even without knowing the details of my health.
While most of these accommodations I directly requested, some were further given by the office after I explained the general impacts of my health conditions, and they were able to help me think through the most helpful avenues for managing school successfully. Could I have gotten through school without these accommodations? Maybe, but it would have been a miserable struggle, and many parts of my life, from grades to physical and mental health, would have suffered profoundly. Above all, I learned that advocating for my needs did not mean I was admitting weakness or being a wimp—in fact, it takes strength to ask for what you need, particularly for girls and women who have been made to feel inherently weak and taught to grin and bear it. Registering for accommodations and not being afraid to then use them allowed me to get more out of my education and help preserve my wellbeing.
Seeking Out Physical and Mental Health Services
A Washington Post investigation in 2020 detailed the atrocious inaccessibility, dismissal, and misdiagnosing that is systemic in college health centers, and is unfortunately reflective of my own experiences even prior to my endometriosis diagnosis. Despite my health service center listing endometriosis as a condition for which they provide care, I have personally avoided seeking help there. Many friends and classmates of mine, particularly women, have also relayed experiencing abysmal care at our college health services. Hopefully this won’t be the case for others at different schools, but if it is, seek care elsewhere. I have been lucky enough to establish healthcare for my endometriosis outside of my school system, and I would urge anyone able to do the same. The Endometriosis Foundation offers guidance on finding the right care for you, and Nancy’s Nook, a helpful online resource platform for endometriosis patients, also offers tools for finding healthcare providers based on location and specialty.
Similarly, I found little to no mental health support at my college, and instead sought a therapist externally. I found one who specializes in supporting people with chronic illness, and I have found it to be exceedingly helpful (you can find someone with this specialty simply by filtering for it on Psychology Today). Having endo can take a severe mental toll that shouldn’t be dealt with alone. Having a trusted mental healthcare professional has been essential for me, particularly during the stresses of college.
Navigating Food Choices
If you follow a certain diet for your endo, such as going gluten- or dairy-free, alerting your school’s office of accessibility can also be helpful, particularly if you’re eating in a dining hall or cafeteria. A school accommodations officer can make sure you gain access to special foods (for instance, in my dining hall, that meant accessing the gluten-free bread and toaster). That being said, maintaining a restrictive diet while in college can be quite difficult. College students aren’t exactly known for having the best diets, and it can be really hard to turn down some late night pizza or study/party snacks. If you are avoiding certain foods, keeping an endo and tummy-safe snack in your bag (I love you, RX bars) or snagging your own safe food before joining a group sharing foods can be helpful. Most importantly, I have found that being open and communicative with friends about my restrictions has been really beneficial, and finding the folks who are understanding and flexible makes dining settings much more comfortable and manageable.
Socializing, FOMO, and Finding the Right Emotional Support
While I came to eagerly, sometimes almost giddily, hop into bed with my heating pad jacked up on high (side note: getting an electric heating pad was a game changer. 10/10 would recommend), I still did and do experience a very real side effect of endo: FOMO. Major FOMO, or Fear Of Missing Out. And the truth is, it often isn’t just the fear of missing out—it’s just straight up missing out. It can be brutal and even feel stigmatizing; one study found that endometriosis-related disruptions to social, academic ,and work lives for college-aged women positively correlated to higher perceptions of stigma.
Endo can pose a barrier to a lot of social activities. From having to skip social gatherings due to flare-ups, to not being able to ride a bike without experiencing pain from pelvic floor dysfunction, to having to leave somewhere early because there isn’t a bathroom nearby, I have often had to pass on the fun activities that seem so quintessential to college and the idealized “youth” everyone tells you to cherish. Even the relatively “smaller” endo symptoms, such as “endo belly,” can make socializing feel more daunting and undermine confidence.
Yet, while missing out on some things is an unavoidable reality, there are ways to ease your experience. First, while putting your health first can often mean making some sacrifices, I have found that it can help set me up for being able to engage elsewhere; for example, choosing to get enough rest on Friday night and pass on that party can help me feel up for brunch or a concert on Saturday. Being patient with my body and listening to what it needs has often allowed me to enjoy things more later, rather than muscling through the pain and ending up miserable regardless. In my experience, dealing with a flare-up at a social event can sometimes feel more isolating and disappointing than skipping it all together. So, even though it’s hard: rest, rest, rest. More fun stuff will be there when you’re ready to enjoy it.
Second: communicate and find your people. Letting friends know when you’re having a flare-up or when you need an easy-going activity can feel really difficult—nobody wants to be a party-pooper—but in my experience, the right friends will understand. Surround yourself with people who make you feel heard, safe, and affirmed. For me, some of that came from connecting with other chronically ill students on campus through a disability justice club. Increasingly, I have found connecting with other endometriosis patients to be particularly uplifting and affirming, even when just through social media and digital communication. Some online support groups, such as MyEndometriosisTeam, can be helpful in sharing experiences and asking for help, while social media pages can be great for feeling less alone and sharing in some much needed humor (my personal favorites are @endohumour and @endometriosismemes on Instagram).
Finally, although it may look like everyone else around you is feeling fine and living it up, that isn’t necessarily the case. The duck syndrome metaphor describes how young people, especially college students, appear calm and put together externally but are frantically paddling under the service to stay afloat. This has felt very true amongst my peers, and I have learned that while people may look fine (probably as I often did!), they could be really struggling internally. Letting go of the peer pressure to maintain a certain image and instead prioritizing your wellbeing—which may mean embracing the less-than-glamourous Friday night Netflix binge—can give those around you the permission to do the same. We aren’t as alone as we think.
When Managing College with Endo Isn’t the Right Choice for You
With all of the tools and tips outlined here, I was able to do well in classes and generally succeed—but it was hard. I also reached a point where I realized that staying enrolled while dealing with intense endo was not the right choice for me and decided to take a semester off to undergo excision surgery. I was fortunate to be in a position to make that decision, and although it was difficult to step away from school and my community there, I knew my health needed to come first and that school could wait. It was the right choice for me and is definitely an option to evaluate if you are struggling with managing your endo while in school. It is okay for your college timeline to diverge from the standard. Everyone’s endo journey looks a little different—the key is finding the care, tools, and support systems that are best for you.