In the fall of 2016, I was a newlywed at the peak of my career. My husband and I purchased our dream apartment, and I had just accepted a prestigious position (and significant salary bump) with a large healthcare company. So much in my life was exceeding my expectations and years of hard work were coming to fruition. And then, suddenly, my rose-colored glasses were shattered.
Or maybe not so suddenly. Years of unexplained pelvic pain, chronic UTIs, sickness, exhaustion, insomnia, heavy bleeding, night sweats, nausea, vomiting and flu-like symptoms had finally caught up to me. And two weeks before starting my new job, I found myself in a South Jersey emergency room with pain so horrific that it took my breath away. Morphine offered no relief, and I was scared that I was dying.
Five hours and one MRI later, multiple baffled doctors assured me that I wasn’t dying and released me with a prescription for Oxycodone and a diagnosis of dysmenorrhea (menstrual cramps) and constipation. I would later come to find out that this experience is a right of passage for most endometriosis sufferers — a bittersweet story that can never be shared without inducing flashbacks and anxiety.
This emergency prompted me to immediately see my gynecologist. After ruling out PCOS, fibroids and various other conditions, they told me that I needed to also rule out endometriosis, a word that I had never heard (despite working in healthcare communication for over a decade). This ruling out could only be done via surgery.
Three weeks later, I was coming out of a long surgery as a new woman with a chronic disease. Unfortunately, my doctor’s suspicions were right; I had stage four endometriosis. And while this diagnosis immediately changed the course of my career and how I approach working, I have learned valuable lessons about how to manage my job while also coping with a chronic illness. I’ve shared my favorite seven below.
1. Using my voice.
I have always been an over-sharer. This gift of gab combined with the fact that I have spent my career working in healthcare has served me well in the endometriosis realm. I have no issues letting employers, bosses and (oftentimes) co-workers know what is up with me and my uterus. This is not to be mistaken with whining or attention seeking. It is not your fault that you have endometriosis, but you cannot expect others to understand why you may be using more sick days than normal or having to push meetings back if you don't let them know.
By speaking up when I am unable to leave my bed during a bad pain flare or when nausea and brain fog prevent me from hitting a deadline, I’ve opened the lines of communication and allowed for modifications to be made to expectations. More importantly, by being proactive, I am taking charge of my career path and letting superiors know that despite having some limitations, I am still a valuable team member who is committed to the job.
2. Asking for accommodation.
In the United States, endometriosis is not yet classified as a disability, even though it impacts multiple essential life functions. This doesn’t mean that you are completely excluded from being protected at work. Most companies will work with you to provide ‘reasonable accommodations’ if you are documenting, communicating, and performing to expectations. You will likely be required to provide forms from your doctor about your diagnosis and what your limitations are, but this is typically a straightforward process.
Accommodations can include anything from remote working and adjustment of hours to a more comfortable chair and flexible schedules. And though I have lost jobs due to endometriosis, I am presently fortunate to be working for a company that understands my disease and works with me as much as they can to find creative solutions and workarounds for my limitations.
If things are getting to the point where your health is taking a back seat to your career, consider asking HR about paid or unpaid leave and short or long-term disability. You might be surprised at the options that are available.
3. Finding a confidant.
Having someone at work who you can speak to about rough days can be an emotional life preserver. Sometimes taking a walk to blow off steam (and occasionally cry) with a trusted work colleague can make the difference between a bad day and a horrible one at the office.
By developing some safe relationships, you can be more open than you would be with HR or your boss. And we all know that just having someone who listens to you makes a world of difference when it comes to in emotional stress, anxiety and pain.
4. Keeping my tank fueled.
No more skipping meals to finish a project or forgetting to drink water. I used to survive on one large meal a day and coffee. I was also a marathon runner, and often put in 12-hour days at the office. This no longer works for me. If I go more than four hours without eating, my nausea skyrockets and my energy levels dip dangerously. This isn’t about weight management; it's about fueling a body that is constantly using energy to fight inflammation. Nourish yourself with fiber, fruits, veggies and healthy fats. Drink water and take vitamins. And when you can, cut back on caffeine and alcohol, as they increase estrogen and inflammation. This continues to be a challenge for me, but as time goes by, I can’t ignore the obvious flares that happen after indulging too much. If I don’t have to wake up too early hour next day, happy hour is more manageable.
5. Getting off the denial train (and, maybe, the subway).
Denial is a coping mechanism often utilized in the first several years of chronic illness diagnosis. Accepting the reality of the ‘new you’ is very different from giving up, but the lines can be blurry. Denial can result in overpromising and underdelivering — especially at work. The sooner you can come to terms with fluctuating pain, brain fog and fatigue, the better you can ‘budget’ your time and energy wisely.
This can mean many things. For me, it can mean taking a cab or uber to work instead of the subway during particularly bad flares. Sure, it costs more. But it also saves me time and energy in the morning. Endometriosis can also cause an impaired immune system, so avoiding public transportation helps keep germs at bay. Let’s be honest, sometimes just standing up can be excruciating, so make things easier for yourself however you can. Little changes add up.
6. Stocking up on anti-nausea medication, heating pads and... extra underwear.
Super plus tampons, pads, and painkillers are probably already a part of your survival kit, but throw some extra clothing in there as well.
Leaks happens to the best of us, even when endometriosis isn’t a factor. But if I had a nickel for every time I had to run out of my office after bleeding all over a chair, I would be retired and probably not writing this article. Save yourself some stress and keep an extra pair of pants and underwear at your desk to avoid wasting an entire workday shopping for new ones (or going home).
7. Giving myself a break (or several).
Endometriosis can often make us feel old and sick. Aches and pains strike multiple body parts. Sitting and standing feels impossible. Sometimes, even breathing hurts. Mentally, brain fog is a common symptom, and staring at a computer screen while struggling with excel documents or tough edits can make me dizzy.
I make an effort to stand up and move around every hour. Whether I am just stretching my legs or walking to the kitchen for a water or tea break, these mini-breaks help me physically and mentally. And I am unapologetic about the days when the only option is my at-home (in-bed) office.
Hopefully, some of these suggestions and tips can help you better manage working with endometriosis. Having a job and an income isn’t only essential for many of us; it is also a privilege. By keeping your health top of mind, you can increase the chances of longevity in your career and avoid burnout.