My health journey may not seem extraordinary at first glance. I’m not battling cancer, facing a disability, or dealing with a life-threatening condition. Yet, the simplicity of my story makes it all the more relatable—my experiences could easily reflect those of many others.
In 2014, my life took a turn for the better. I turned 24, landed a job I adored, adopted a dog, moved into a new home, and even got married—all in a single summer. However, just months after saying “I do,” that same year revealed a harsh reality: I was dealing with an incurable illness after 13 years of chronic pain.
Endometriosis is a stealthy adversary. It typically begins at puberty (for me, it was age 11) and slowly ensnares your entire body. Unbeknownst to my younger self, cells that should have been expelled during menstruation were instead implanting outside my uterus, resulting in lesions, adhesions, scarring, and unbearable pain along with excessive bleeding.
From the age of 11 to 24, countless doctors dismissed my fainting spells and abdominal agony as psychosomatic issues. This common response to women’s health concerns unfortunately perpetuated the cycle of suffering for many like me.
When I left for college, I realized that I couldn’t balance my studies with the debilitating pain. The only medication offered to alleviate my severe pelvic discomfort was birth control. I remember the day I first filled that prescription. Walking to Walgreens from my dorm, I was unprepared for the shock at the register: “$62.” I was stunned. How could I afford that?
On average, my birth control cost ranged between $60 and $90—an astronomical fee for a college student earning a modest income from campus jobs. Before my endometriosis diagnosis, I had limited experience with the healthcare system. I was unaware of the costs associated with my mother’s cancer treatment or the terms like “insurance premiums,” “co-pays,” and “deductibles.” Yet suddenly, as I approached adulthood, the language of chronic illness became my new norm.
Then, halfway through my degree, the Affordable Care Act (ACA) was enacted. To be honest, I initially resisted the idea. Why should I be responsible for someone else’s healthcare costs? Back then, I viewed illness as a personal failure—how naive I was.
Fast forward a couple of years after graduation, I found myself at the pharmacy once again, still grappling with chronic pain. As I approached the drive-thru window, I braced for the familiar financial blow. But this time, the words were different: “There’s no cost. Have a great day.” I was in disbelief as I saw “$0.00” printed on the receipt. In that moment, I felt an overwhelming sense of relief and gratitude.
However, my health issues escalated beyond mere pelvic pain; I began to suffer from debilitating fatigue and digestive problems. My weight dropped to an alarming 108 pounds at 5 feet 10 inches tall.
The trajectory of my medical journey included an emergency room visit, a misdiagnosis, a series of uninformed doctors, and ultimately, surgery. I vividly remember emerging from anesthesia to learn from my doctor, “You definitely have endometriosis.” The same doctor, however, advised my husband to push for pregnancy “right away,” leaving me without a treatment plan.
After receiving my diagnosis, I felt cornered by medical bills. Thankfully, thanks to the ACA, I wasn’t out of options. I switched to a new OB-GYN who specialized in endometriosis, and I was relieved that my gender wouldn’t limit my healthcare access. Most importantly, I wouldn’t be dropped from my insurance simply for needing care.
Frequent surgeries are part of managing my incurable illness. My second surgery was scheduled the day after the 2016 election. Lying on the operating table, I listened to the concession speech on the TV next door, contemplating the uncertainty of my future healthcare.
I remember the fear regarding costs, especially for pain medication on my worst days. I worried about my insurance dropping me, or my IUD failing, forcing me back into a cycle of expensive birth control. I often think about the possibility of losing my job or my home, and how my illness could overshadow any joy in my life.
The stark reality is that I don’t expect to maintain my current level of health as I age. I brace myself for future complications and additional health issues, knowing that chronic illness rarely comes alone. I monitor my body closely for signs of new autoimmune disorders, as this is now part of my reality.
But my worries extend beyond myself. I think of my mother, who has battled stage IV cancer for nearly seven years, my sister with autism, and the many women fighting endometriosis who face even tougher battles.
This is why I am sharing my story—not just to vent, but to call for action. I was once healthy until I learned I wasn’t, and I urge Congress to safeguard healthcare for everyone, including those who might not share my experience. In 2023, access to healthcare should be a right, not a privilege.
For those seeking additional insights on endometriosis treatment and pregnancy, you might find this blog post helpful. And if you’re interested in home insemination options, check out this well-reviewed at-home insemination kit.
In summary, my journey through chronic illness has taught me the importance of accessible healthcare. The ACA has played a crucial role in my ability to manage my endometriosis, and it’s vital that we continue to advocate for health coverage that supports people like me.