The Stigma of Endometriosis: Cat's Story – Cora
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The Stigma of Endometriosis: Cat's Story

“People have complained to me that you make it too visible when you’re struggling with your health at work. Try and express your emotions in private and to make sure you aren’t overheard talking about your personal issues.”

“Maybe it would be best if you took some time off.”

“You’re making people uncomfortable when you cry at work.”

I’ve had to field comments like these more often than I’d like to admit. Ten year ago, when my endometriosis symptoms began, I was 13 years old. My periods, since I got my first one at age 11, had always been terrible, but around the time I started high school they seemed to get impossibly worse. I spent four days out of every month doubled over in the bathroom, unable to walk or eat, let alone go to school or work. The symptoms, true to most people’s experience with endometriosis, got worse as it went untreated. Doctors only told me to take Midol, to exercise more, to lose weight, to improve my periods. I finally got on birth control at age 14, only to have severe emotional reactions to the hormones. Most forms of birth control were high-estrogen, and they made me dramatically unstable and unable to function emotionally. My periods only improved a small amount; the pain was still unbearable.

Even now, I have a hard time remembering anything that happened to me in high school. It all seems like a weird, terrible dream. For at least a week out of every single month of high school, I was sick, distracted, and severely depressed from the pain. My grades dropped, my motivation weakened, and I grew despondent and hopeless. I went from a straight A student to struggling to make Bs. While I used to love school and I thrived in academic settings, my illness took over my life and made it impossible to enjoy myself because I knew, in three weeks, I’d be back in that same pain.

As high school progressed, I finally began searching for serious medical advice for my periods. It took a few years to find a doctor who took my pain seriously, and when she finally diagnosed me with endometriosis, it was a mixture of relief and absurd anger that it took this long to diagnose. It can take anywhere from three to twelve years to diagnose endometriosis, primarily because the only way to definitively diagnose a person with endometriosis is through a laparoscopy, an exploratory surgery searching for the growths and lesions people with endometriosis develop in their uterus and ovaries. There are also the larger societal implications, one many women with endometriosis have experienced firsthand; doctors do not take women’s pain seriously. Women suffer more pain due to chronic illness than men because we are routinely seen as being dramatic or emotional when describing our pain. I experienced this myself, spending a decade hearing that if I lost weight, took Midol, drank enough water, or did yoga, my periods would improve and I wouldn’t suffer so much. It took finding a doctor recommended by my therapist to recognize my pain as what it was; a serious and debilitating disease.

When she finally gave me an ultrasound, the screen itself was blacked out due to the size of the growths in my uterus. I got a laparoscopy, and had to have a surgery to remove 1 and ¾ of my ovaries. After recovery, I returned to my work study position in college only to realize that my coworkers, my bosses, my professors, all knew how badly I struggled. I was still reeling from this surgery, the risk of death or serious harm, and the embarrassment that my pain had gotten severe enough to affect how I behaved and thus how people perceived me. I fell into a deep depression, quit my job, and dropped out of college. Not long after, I was hospitalized for suicidal ideations due to all of these factors.

That wasn’t the first time I’ve been hospitalized. Only two years before, I took my first “personal health” break from college, right after I lost my job from too many sick days due to my endometriosis, and things all fell apart.

Endometriosis: An Epidemic

My experience with endometriosis — a condition in which endometrial tissue is found outside of the uterus — is not uncommon. According to one study, endometriosis affects 10 to 15% of women of reproductive age. Endometriosis can be treated with a combination of surgeries, hormone therapy, and homeopathic treatments including dietary changes and exercise.

We face many obstacles in seeking treatment and care for our struggles. For endometriosis, like nearly every other part of reproductive health, there is a stigma attached that affects women’s ability to get proper treatment. People with periods struggle with having to hide their symptoms, aren’t taken seriously when they experience pain or illness, and often face discrimination in workplaces and medical environments due to outdated and sexist ideas of what a period is. Since endometriosis isn’t a visible illness, people who try to get sympathy, treatment, or support for their symptoms are often brushed off as lazy, attention-seeking, or disruptive.

Changing the Conversation around Endometriosis

In the workplace, I struggle even today with my endometriosis. This illness is chronic and permanent. While surgery dramatically changed the level of pain I experience, my periods still leave me lethargic, sick, and drained. My mental illness struggles become much more severe when I’m on my period, leaving a week out of every month that I am noticeably less stable than usual. Even at my current job, word got out about my struggles with panic attacks and now my boss sometimes verifies that I’m stable with other employees in times of high stress. I was fired from a job I held a few years ago due to calling out during my probationary period, while I was in the familiar position of being curled up on my bathroom floor, a pillow tucked under my back, trying to hold down food while the waves of pain washed through me every few minutes.

I can’t imagine where I would be today without treatment for my conditions. If endometriosis goes untreated, symptoms can and do get worse.

I spent a long time living in fear and anger that I had these conditions. I did a lot of “why me” thinking and spiraled into existential crisis. I still struggle with these things even today. But there is hope. Things are getting better. There are nonprofits all over the country that provide access to treatment for low-income people. Planned Parenthood has more donations now than they’ve had in a long time, despite recent attempts to defund. The National Women’s Law Center fights constantly against insurance discrimination for women who’ve faced being charged extra simply for their potential for these conditions. Sister Song, an organization created by and for women of color, is making great strides every day for underprivileged women in the South to get treatment, education, and information about reproductive health.

Even celebrities are working hard to erase stigmas attached to their conditions. Padma Lakshmi is a dedicated advocate for her organization centered on endometriosis care and treatment. She works tirelessly in the foundation she created, The Endometriosis Foundation of America, a foundation that is far-reaching and immensely powerful in bringing awareness and resources to women around the country. Lara Parker, BuzzFeed writer, shares heartbreaking and relatable  articles about her struggles with endometriosis in often comedic environments. Whoopi Goldberg, a longtime advocate for social issues, has spoken publicly about her health and has moved to create natural remedies for endometriosis symptoms.

If you’re reading this and you have endometriosis, you are not alone. There is a vast and diverse community, both online and in real life, of people like us. The Endometriosis Research Center can help you find people like you, raise awareness and educate others about your struggles, and find solidarity with people who understand you. Endometriosis.org has a list of global in person support groups.

Today, I am on a steady regimen of medication that makes my periods “normal”, a week or so long at a time. My pain on some days still gets pretty bad, but nothing compared to how I used to feel. It will be a year in September I’ve been at my job, I’m exploring going back to school, and I’m in a wonderful relationship with a woman who loves me and supports me, and even knows to bring me chocolate and a heating pad whenever I am in too much pain to speak. My doctors all support me, I am working with a life coach to evolve my eating, spiritual, and living habits to make myself healthier and happier. I use my experiences with endometriosis to educate others and support other sufferers. I am healing.

March is Endometriosis Awareness Month. Every day, the world learns more and we get stronger. Every day, we are a step closer to feeling better. There are systemic problems with chronic illness, especially as they pertain to women. But there are also system-wide improvements. Our community is getting bigger, our volunteers are getting stronger, our stigmas are getting quieter, and we are getting better.

BIOGRAPHY

Cat is a 23 year old Atlanta native with a wonderful girlfriend, cute pets, and way too many t-shirts with cats on them. She spends her time working, leading ghost tour pub crawls, telling bad jokes, and reading conspiracy theories. She’s passionate about fat positivity, intersectional feminism, mental and reproductive health, and LGBTQ rights.

Photo Credit: Pixabay 

 

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