My health journey isn’t a harrowing tale. I don’t have cancer. I’m not disabled. Thankfully, I’m not facing those dire situations anytime soon. But perhaps that’s what makes my experience so relatable — it’s so ordinary and could happen to anyone.
2014 was a landmark year for me. I turned 24, landed a job I adored, adopted a dog, moved into a new place, and tied the knot, all within a summer. But shortly after my husband and I said, “I do,” that same year revealed the reason behind 13 years of chronic pain and other troubling symptoms: I had an incurable condition.
Understanding Endometriosis
Endometriosis is a sly disease. It shows up with puberty (for me, at age 11) and takes a grip on your entire being. Unbeknownst to my younger self, cells that should have been shed during menstruation were instead implanting outside my uterus, leading to lesions, scarring, and, most notably, excruciating pain and heavy bleeding.
From the age of 11 until 24, doctor after doctor dismissed my fainting spells, agonizing pain, and the constant need to plan my life around my menstrual cycle as “all in my head.” This response was, unfortunately, typical for women with my condition.
The Financial Burden of Treatment
When I went off to college, I knew I couldn’t earn my degree while enduring this pain. The only solution offered to alleviate my severe pelvic pain was birth control. The first time I picked it up from the local pharmacy, I was taken aback when the cashier rang up my total: “Sixty-two dollars.” My heart sank — where was I supposed to find that kind of money? My birth control prescriptions typically cost between $60 and $90, a financial burden for a college student working two part-time jobs.
Before my endometriosis diagnosis, I had little experience with healthcare costs. I was blissfully unaware of my mom’s cancer treatments when I was in middle school or during her second diagnosis in my sophomore year of college. Terms like “insurance premiums,” “co-pays,” and “deductibles” were foreign to me until I turned 18 and my world shifted.
The Impact of the Affordable Care Act
Halfway through my college years, the Affordable Care Act (ACA) was enacted. To be honest, I initially disliked the idea. Why should I be responsible for someone else’s healthcare? I thought of illness as a personal failing, a sign of weakness that deserved stigma. Oh, how naive I was.
Years later, I recall a day when I drove to pick up my birth control. Still grappling with chronic pain and a list of endometriosis symptoms, I was shocked when the pharmacist said, “There’s no cost. Have a great day.” My eyes widened — the bill was $0.00. I couldn’t help but breathe a sigh of relief. “Thank you, ACA!”
That medication provided some respite, but my symptoms began to evolve. My pain was no longer just pelvic discomfort; it became a constant ache that made getting out of bed feel like a monumental task. I started to react poorly to nearly everything I ate, leading to a cycle of eating, writhing in pain, and then passing out from exhaustion.
My weight plummeted to a mere 108 pounds at 5 feet 10 inches tall.
Facing the Reality of Chronic Illness
At my worst, at age 23, I underwent a series of medical evaluations: an emergency room visit, a misdiagnosis, and a string of doctors who meant well but provided little help. I had to demand a diagnostic procedure from an OB-GYN who was skeptical about my condition. After a surgery, I finally heard the words, “You definitely have endometriosis.” My doctor, however, didn’t offer a pain management plan or further assistance.
After receiving my diagnosis, the mounting medical bills became daunting. Thankfully, the Affordable Care Act opened doors for me. Unlike many women before me, I was able to “fire” my unsympathetic doctor and find a specialist in endometriosis. Despite the financial strains from my wedding, I didn’t have to face exorbitant healthcare costs simply because of my gender. Most importantly, I was protected from losing my insurance for needing it.
Living with Uncertainty
Living with an incurable illness means frequent surgeries. My next one was scheduled the day after the 2016 election. I lay on the operating table, the sound of the concession speech from the TV nearby filling the room. I couldn’t shake the anxiety: would this be my last surgery? I remembered the agonizing costs of my birth control — expenses my husband and I could hardly manage.
In a panic, I called my OB-GYN to ask about getting an IUD. While it would prevent pregnancy and potentially slow the growth of my endometriosis, it was a gamble. I risked my body rejecting it, causing more issues than my illness already presented. But at that point, I was desperate for some sense of stability.
Post-surgery, the pain hit hard. I was filled with dread — was this how I would feel for the rest of my life? I thought about the medications I needed for my worst days and the fear of being unable to afford them. It’s a common misconception that people without ACA coverage shouldn’t worry; the truth is, I do worry.
I’m concerned about lifetime caps on surgeries, the possibility of my IUD failing, and the insurance provider who could easily decide to drop me. The thought of losing my job or home due to health issues is daunting.
I don’t expect my health to improve; I brace myself for more challenges. It’s why I’m vigilant about monitoring any new symptoms, knowing that chronic illness often comes in waves.
A Call to Action
But my concerns extend beyond myself; I worry about my mom, who’s been battling stage IV cancer for nearly seven years, and my sister with autism. I empathize with friends relying on the ACA and my community of women enduring even greater struggles with endometriosis.
And that’s why I’m sharing my story — as a call to action. I was perfectly healthy until I discovered I wasn’t, and I urge Congress to protect healthcare for everyone. I can’t go a day without health coverage, and in this day and age, that shouldn’t be a luxury.
In sum, my experience highlights the importance of accessible healthcare, particularly for those with chronic illnesses. Without the ACA, my journey would have been much more difficult.
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