How Amending the ADA Could Help Those Suffering From Endometriosis

Every month, I apprehensively wait for the other shoe to drop. The months themselves do not cause my foreboding; rather, it’s what they bring: my period. It’s not just the severe cramps or the heavy bleeding that I dread but cannot escape. It’s the unknowns of new or worsening symptoms of an incurable condition that’s most likely endometriosis.

Growing up, I witnessed my mother and other women in my family experience similar trepidation with every turn of the calendar. When they finally convinced themselves that their menses were not — could not be — “normal” and sought medical help, they were sent home with a birth control prescription and dismissively told to take ibuprofen for the pain.

After being forced to move to remote work because of disabling monthly anguish that went on for years, my mother had a hysterectomy. Only then did doctors discover that she had endometriosis; her surgeons found a six centimeter-long tumor composed of endometrial tissue on one of her ovaries. Despite displaying symptoms of endometriosis for years, my mother only received a definitive diagnosis of endometriosis after an invasive laparoscopic procedure. Unfortunately, her situation isn’t unique — or even rare. Endometriosis affects between 5% and 10% of women in the United States, and, on average, a diagnosis can take from four to 11 years for a patient to obtain.

Why does it take so long to diagnose this condition? Health care providers often downplay or ignore women’s self-reported symptoms. As a result, many women, my mother included, doubt themselves and the severity of their symptoms. Ultimately, many give up seeking care.

Menstruation is also a subject laden with taboos. Even uttering the word is often frowned upon, which is why there are currently more than 5,000 euphemisms for menstruation. The stigma surrounding women’s reproductive health and society’s view of menstrual pain as normal are contributing factors in the delay of diagnosis.

Another consequence of this taboo is medical professionals’ lack of knowledge of such conditions, their causes, symptoms, and treatments. Until 2020, many textbooks in use at accredited medical schools stated that endometriosis was less common in Black women, despite endometriosis being one of the most common reasons that Black women undergo OB/GYN surgery in the United States.

As a result of the social stigma surrounding menstruation, ingrained medical sexism and medical racism, and the fact that endometriosis can only be definitively diagnosed through an invasive procedure, diagnosis is delayed for those who ultimately receive it — not to mention those who never do because they gave up on an allopathic answer. In the meantime, women with endometriosis, like my mother, are forced to miss school or work each month due to debilitating symptoms and also experience social stigmatization by retreating from society, which in turn has negative effects on mental health.

But even those who receive an endometriosis diagnosis don’t experience it as a panacea. Currently, the only “cure” for endometriosis is a hysterectomy, which is a treatment of last resort. The majority of those diagnosed make do by attempting to manage their symptoms through pain medication, hormone therapy, or surgical procedures to remove excess endometrial tissue. While these can provide some relief, they do little to combat other problems associated with endometriosis, like infertility and increased risk of ovarian cancer.

While critical, unwinding medical sexism, medical racism, and social taboos takes time, and these efforts don’t directly help those who endured the system, ultimately received an endometriosis diagnosis, and still suffer monthly from their temporarily disabling condition. Those living with endometriosis require a more concrete solution to aid them in managing a condition that often severely impacts their daily lives for a week each month.

One immediate solution is amending the Americans with Disabilities Act (ADA) to classify endometriosis as an automatic disability under the law. The ADA already classifies other common conditions, such as diabetes and PTSD, as automatic legal disabilities qualifying for reasonable accommodations.

Some have opposed classifying endometriosis as a disability under the ADA because it would be “too expensive.” The data, however, argue otherwise. A 2017 study by Soliman et al. demonstrated a relationship between endometriosis symptoms and employee absenteeism, resulting in an annual loss of $80 billion due to decreased productivity. If employees with endometriosis were given reasonable accommodations, these costly, recurring productivity losses could be eliminated: a win-win situation.

For those who argue that the political process is slow and that Congress is unlikely to revise the ADA to further benefit the disabled community, this position is also faulty if there is political will. The ADA was amended once in 2008, and so it’s clearly possible to do so again.

We cannot afford to force so many women with endometriosis to withdraw from work and school on a monthly basis when it is entirely possible — and easy — to provide reasonable accommodations. Join me in contacting your federally elected representatives and ask them to amend the ADA to classify endometriosis as an automatic disability.