My Invisible Disability, Endometriosis, Has Me Constantly Dealing With New, Bizarre Symptoms

portrait of brittany ferri photographed at home in newark, new york, wearing red shirt and carrying sign that lists her invisible disabilities
My Endometriosis Has Left Me IsolatedChad Batka

It’s not easy for me to let people in. I worry that if I really let them see how much pain I’m in or how much help I need, I’ll be a burden. So I isolate myself a lot. But it wasn’t always this way.

Up until a few years ago I was able to live a pretty typical life. My period had always caused me extreme pain for about two to three days a month, but I was made to believe that the pain was normal and that I just needed to buck up. I come from a conservative religious family, so even though my mother had endometriosis, we didn’t really talk about it.

This story is part of Prevention’s We Are Not Invisible project, a series of personal and informative stories that shed light on those with Invisible Disabilities in honor of Invisible Disabilities Week 2022.

Also, I wasn’t encouraged to visit the gynecologist so it would be years before I learned that I had endometriosis, too, and that it is a serious disorder in which the tissue that lines the inside of the uterus (called endometrial tissue) grows outside of the uterus, which can cause intense pain and heavy menstrual bleeding.

My journey to be understood

Throughout my college years and my graduate program in occupational therapy, I somehow got through the worst days of the month with heating pads and bed rest if I could, and focused on the fact that the pain would be over in a few days. But in my mid 20s, when I was working as an occupational therapist in a hospital, the pain began to last longer and become more intense. I’d have trouble just sitting up straight or helping to move patients. I remember often feeling as though I’d be better off in one of the hospital beds rather than trying to help other people get around.

It wasn’t until age 27, when I began feeling intense, stabbing pain—even when I wasn’t having my period—that I went to urgent care for help. The pain was so overwhelming, I couldn’t move. I’d never felt anything like it before, and because of the location of the pain in my abdomen, the doctors initially thought I had appendicitis. But an MRI at the emergency department showed that I had a large cyst on my ovary. It took months of further testing and follow-ups with my gynecologist—and debilitating pain—until it was determined that the cyst was growing fast and needed to be removed. In March of 2020, right as we all went into the pandemic lockdown, I had surgery to remove the cyst, which the doctors found was filled with endometrial tissue and confirmed that I had endometriosis.

The surgery helped, and I was put on hormonal birth control to treat my symptoms, but I was still in terrible pain. So after finding a new doctor, I had a second surgery several months later, where even more endometrial tissue was removed. By that point, though, my autonomic nervous system (which controls involuntary processes like heart rate, blood pressure, breathing, and digestion), had begun to falter, and I was diagnosed with dysautonomia, which is an umbrella term used to describe a disorder of the autonomic nervous system. The causes of dysautonomia are varied (and tend to be misunderstood) but it’s often prompted by another illness or trauma—which in my case, may have been my endometriosis or the surgeries I’ve had. And while there are several types of dysautonomia, for me, it causes chronic nausea, blood pressure drops and dizziness, sensitivity to heat, and fatigue.

Photo credit: Chad Batka
Photo credit: Chad Batka

Living with endometriosis

Right now, I work primarily from home doing program development in healthcare, clinical consulting, and patient education. Being at home makes it a lot easier to deal with my symptoms. I’ve also figured out some lifestyle modifications that help, such as adapting my diet and keeping my stress level down (which is hard!).

But one of the most difficult things about dysautonomia is that most people don’t know what it is and they can’t see it, so it can seem like I’m constantly dealing with new, bizarre symptoms. That’s why I don’t like to talk about it with anyone other than my boyfriend, who lives with me. After all, who wants to deal with someone who is always in pain or nauseous? I can’t imagine anyone wants to hear my depressing updates.

I have really caring friends, and some of them have been hurt that I haven’t shared more about my illnesses with them, but I don’t want to be a downer or make people cater to me. I would hate to hold other people back from doing the activities they want to do, or cause them to change arrangements for me. It’s really hard for me to accept help from anyone except my boyfriend. So, I withdraw. It’s lonely, for sure, and I’m trying to maintain my friendships as much as possible, but I’m not sure of the best way to do that.

So for now, I’m working on navigating my illnesses. I haven’t given up on finding true relief, and my boyfriend and I are even discussing if it would be possible for us to have children in the future. But until then, I’m taking things one day at a time.

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