My health care story isn’t necessarily dramatic. I don’t have cancer. I’m not disabled. I’m not dying. And I’m not in danger of those things any time soon, hopefully.
But I think that’s what makes my story compelling — how ordinary it is, how easily it happened to me and could happen to you.
2014 was a great year for me. I turned 24. I started a job I love. I adopted a dog. I moved into a new place. I got married. And all of that was within one summer.
Just a few months after my husband and I said “I do,” 2014 became the year I found out what 13 years of chronic pain and other symptoms signaled. I had an incurable illness.
Endometriosis is a sneaky disease. It arrives at the onset of puberty (for me, age 11) and takes a chokehold of your entire body. Unknown to my teenage self, cells that my body should have been shedding regularly through menstruation were abnormally implanting outside of my uterus, causing lesions, adhesions, scarring, and most obviously, excruciating pain and excessive bleeding.
But from age 11 until 24, doctor after doctor wrote off my fainting episodes, writhing pain that gave me cold sweats and spasms, and the overall necessity to schedule my life around a normal bodily function as “all in my head.” I later found out that response was par for the course for women with my disease.
When I left for college, I knew that I couldn’t get a degree and live like this at the same time. So they offered me the only medication that could somewhat manage my severe pelvic pain: birth control.
The first time I filled it, I walked to the Walgreens down the street from my dorm. Up until then, my mom had managed any medications I needed, so I had never been financially responsible for my own care. I didn’t think much of it. My parents had never commented on how much prescriptions cost.
The pharmacist rang up my bill: “Sixty-two dollars.”
My stomach lurched. $62 on what income? The savings I’d accumulated for emergencies?
On average, my prescription birth control to manage my crippling pain cost anywhere from $60 to $90. For a college student who earned a small wage through two campus jobs, it was devastating.
Prior to my endometriosis diagnosis, my interactions with the health care system were fairly limited. I wasn’t privy to the costs of caring for my mom’s cancer when I was in middle school or when she was diagnosed again the summer of my sophomore year of college. I didn’t know what “insurance premiums,” “co-pays” or “deductibles” were.
But suddenly, at age 18, the vocabulary that comes with a chronic illness became my lingo. And I didn’t even know I had a chronic illness yet.
Halfway through my bachelor’s degree, the Affordable Care Act passed. At the time, to be honest, I hated the idea. Why would I want to be responsible for a complete stranger’s care? It angered me to think of being saddled with the cost of someone’s acupuncture, chiropractor, or some other medical procedure I then thought was bullshit.
It was a time I thought of sickness as almost a “moral failing,” as if needing help with health care made you a weaker, irresponsible individual. How little I understood then.
But I remember one particular day when I drove to pick up my birth control a year or two after graduation. Still fighting chronic pain and a long list of other endometriosis symptoms, I remained on the same medication a pharmacist rang up for me when I was 18. Bracing myself for the cost of my birth control, I rolled up to the drive-thru window and waited.
This time was different. “There’s no cost. Have a great day.”
“What?” my eyes widened. I snatched the paper bag from the pharmacist’s hand, and sure enough, in bold print, it said, “$0.00.”
I pushed a huge gulp of oxygen out of my lungs. “Thanks, Obama.”
This medication sustained me for a little while longer. And then my symptoms began to change.
No longer were my health concerns limited to pelvic pain and hemorrhaging. My period pain morphed into an ever-present ache that made it hard for me to wake up in the morning, drag myself to work, and do my job. My body also started rejecting nearly every type of food I ate, so that my after-work routine quickly turned into “eat, writhe in pain, pass out for hours, wake up, get ready for bed, go back to sleep.”
My body weight plummeted to 108 pounds. I’m 5 feet 10 inches tall.
At my sickest, age 23.
What followed can easily be traced through my medical expenses: an emergency room visit; a misdiagnosis; a procession of well-meaning but unhelpful doctors; an unbelieving OB-GYN from whom I had to demand a diagnostic procedure; a litany of pills; and a surgery.
I still remember coming out of the haze of anesthesia and seeing my doctor peering over me. “You definitely have endometriosis.”
That same doctor spoke directly to my husband of four months (not me) when he told me I needed to get pregnant “right away” if I ever wanted to have children. That same doctor shuffled me out of his room without a single pain pill or treatment plan. The doctor who had rolled his eyes when I asked for help with my condition simply left me high and dry.
As soon as I received a diagnosis and a pile of medical bills, I hit a dead-end.
But thanks to the Affordable Care Act, I wasn’t out of options. Though many women before me had been limited in their search for an OB-GYN, I quickly “fired” my doctor and found a new one who specialized in endometriosis.
And although I’d been given a nice chunk of costs to follow the money I’d just recently spent on my wedding, I didn’t have to pay more than necessary for my health care because of my sex.
But most importantly, I wasn’t going to be kicked off of my insurance simply because I needed to actually use it.
As part of the “incurable” of my incurable illness, I need frequent surgeries. Right now, the only way to really manage my endometriosis is to cut me open and burn out however many sites are able to be burnt off.
Fate would have it that my second-ever surgery was scheduled the day after election day, 2016. I was 26 years old.
I stared at the ceiling as Hillary Clinton’s concession speech played in the surgery prep room next to mine. Nurses spoke in hushed tones over it and shook their heads as I squeezed my eyes shut and absorbed the gravity of the situation.
Two surgeries in two years. Would this be the last one I could have? Seeing the writing on the wall before election day, my mind had flashed back to the times I cried over the cost of my prescription birth control — a cost my husband and I couldn’t afford to incur. Days before my surgery, I called my OB-GYN in a panic. “Can you put in an IUD?”
An IUD would not only guarantee that I couldn’t get pregnant (if I can conceive at all) as a woman with a high risk for miscarriage, stillbirth, ectopic pregnancy and other potentially life-threatening complications. It would also hopefully (and that’s a big “hopefully”) slow the growth of my endometriosis.
It was a gamble. There was a likelihood my body would reject it. IUDs shift out of place frequently, so it could easily perforate my paper-thin uterus. It could cause me more problems and more expenses than my condition offered me on its own.
But at that point, I would do anything for some semblance of “peace of mind.” An IUD would potentially last me five years. Hopefully (again, another big “hopefully”) that would be enough.
This time around, I came out of anesthesia to immediate fear. Post-surgery pain slid around me like two snaking arms, and I shuddered from the after effects of my sedative. An attendant quickly administered morphine, but not before I felt the terror that many chronic pain patients feel. “Wait. I can feel like this?”
I thought about not being able to afford the pain medication that I take on my worst days, or the other pills that help me go to work, drive a car, clean my house, sit up straight, and live a normal life. I thought about having to lose so much more of my young life than I had already been forced to sacrifice, due to my illness
“You don’t have insurance through Obamacare,” others had told me. “Why are you so worried?”
Facing down another surgery bill that has yet to hit my mailbox, I worry about lifetime caps that would limit how many times I could have a surgery that is truly my only “treatment,” or my body someday rejecting my IUD and forcing me to pay for expensive birth control again. I worry that the insurance provider that gave me a second chance of life could easily drop me when given the opportunity. I’m sick over the fact of getting sicker and having nowhere to turn. I often think about being forced to quit my job to take care of myself, or losing our rental home, or having the joy I find in life completely sucked away.
The truth is, I don’t expect to have the physical abilities I have now when I’m older. I expect to get sicker. And as anyone with a chronic illness can tell you, it’s rarely just one illness that you end up fighting. It’s why I carefully monitor my body for symptoms that signal a new auto-immune disease, a new army of doctors, a new assortment of pills and a new list of medical bills.
It’s not paranoia. It’s my reality.
And I don’t just worry about me. I worry about my mom who has been fighting stage IV cancer for nearly seven years. I worry about my sister with autism, my friends who do have insurance through the Affordable Care Act, my community of women with endometriosis who suffer more significantly than I do.
But I want to do more than just worry. And that’s why I’m sharing this story — as both a plea and a precaution.
I was perfectly healthy until I learned I wasn’t.
This is why I’m asking Congress to please protect health care for people like me and people not like me. I can’t survive a day without health care coverage. And in 2017, I shouldn’t have to.