If you ask most women, they can tell you about a friend, family member, or how they themselves have experienced such debilitating pain once a month that it renders them incapacitated.
For those living with endometriosis (a condition where tissue similar to the lining of the uterus grows outside the uterus) — 11% of American women between ages 15-44 according to the Office on Women’s Health — debilitating menstrual cramps, chronic pain in the lower back and pelvis, intestinal pain, and painful bowel movements or pain when urinating are common symptoms of the disease. For many individuals with endometriosis, this excruciating pain interferes with their ability to work.
As we recognize December as Chronic Disease Month, relief is available. The Connecticut Paid Leave Program recognizes the needs of those with chronic disease, including endometriosis, and offers individuals the ability to take paid, intermittent leave or a reduced schedule from their employment.
[RELATED: CT Family and Medical Leave vs. Paid Leave: Here’s what to know]
As chair of Connecticut’s Endometriosis Working Group, I’ve had the privilege of learning from the many individuals in our state who live with endometriosis. Though endometriosis largely affects individuals of reproductive age, the disease can and does impact adolescents, menstruators and non-menstruators of all races — including cis males, post-hysterectomy/menopause and before menarche.
A few months back the Working Group was discussing how endometriosis impacts an individual’s ability to work. Members were sharing how they’d missed work because of the excruciating pain or showed up to work despite it. Other members discussed how frustrating it is to be able to predict when they will be rendered debilitated each month, but because of the stigma associated with women’s pain and menstruation, they can’t request the time off that they need.
The stigma and discrimination that women face can be seen in limited federal funding to study diseases that disproportionately impact women, women’s pain dismissed as normal, and women’s credibility over their lived experiences constantly called into question. This societal treatment culminates in the reality for those living with endometriosis. On average, it takes 10 years to be diagnosed with the disease and there is currently no cure.
Women also face a financial burden when living with endometriosis. Beyond the cost of medical appointments and surgery (if you can afford them), missing work is common, as is changing jobs to accommodate the limitations placed upon you by the disease. According to a 2019 National Library of Medicine study, “women diagnosed with endometriosis showed a lower likelihood of working in their desired profession and stronger health-related limitations in their career decisions.”
In that same study, many women reported using sick time, vacation time, or overtime when they felt too sick from their symptoms of endometriosis. While there are many jobs that offer paid sick days or vacation time, there are just as many that do not. For many people living with endometriosis, a missed paycheck is not an option. Furthermore, these individuals should not have to use their accumulated vacation and overtime because they are living with a chronic disease.
That’s where the Connecticut Paid Leave program steps in. As our Working Group was discussing how to support Connecticut workers living with endometriosis, one of our group members shared that she is able to support her patients by advising them to apply for Connecticut Paid Leave benefits. As a major proponent of that policy, I was embarrassed that I hadn’t thought of it earlier. Lawmakers were intentional in creating a program that addresses the needs of those living with a chronic illness. A covered worker can take leave continuously, intermittently, or on a reduced schedule under the Connecticut Paid Leave program.
Connecticut Paid Leave is also responsive to another major barrier for those with endometriosis. Currently, the only way to receive an official diagnosis is to have invasive surgery. For many people, for a variety of reasons, surgery is not an option. Connecticut Paid Leave recognizes this and doesn’t require an official diagnosis. To qualify, an individual must be under the treatment of a healthcare provider and that provider must certify that they are experiencing a serious health condition, but a diagnosis is not a requirement.
As we continue to work to address the many problems associated with endometriosis, we can offer those living with the disease financial relief and peace of mind. Connecticut Paid Leave provides people with income replacement benefits when they need to take time away from work to deal with their symptoms, medical appointments, recovery from surgeries, or the side effects of medication. It also offers those living with endometriosis the ability to present their employers with documentation about their disease, legitimizing their need to miss work.
I’ve met the most resilient people through the Endometriosis Working Group. It feels like a huge win that in Connecticut, we can offer paid family and medical leave to those living with endometriosis and their family members. To learn more about the program and how to apply, visit ctpaidleave.org and to get involved with the Endometriosis Working Group, visit housedems.ct.gov/endo.
Jillian Gilchrest is a state representative from West Hartford.