I Was Healthy Until I Wasn't
1:33 PM
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 Walgreen’s 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. “$62.”
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.
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 was still 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 lbs. I’m 5'10".
 |
| At my sickest |
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 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 walls 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.
Posts
15 comments
As a sign of gratitude for how my wife was saved from fibroid, i decided to reach out to those still suffering from this.
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