This Is What It’s Like To Have An Illness You Can’t Beat


Health

Our culture frames illness as a battle to be won, but sometimes
it’s just a thing you live with.

Posted on April 12, 2017, 14:01 GMT

Marcos Chamizo / BuzzFeed

It was a sweaty morning in the last days of August
2014 and I waited, twitching, on an endocrinologist’s exam
table. There was a pop! in my right elbow, so that
half of my torso twisted forward at its own impulse. It’d
gotten to the point where I had trouble staying seated at
work. The overhead lighting, the rise and flow of chatter,
the hurried thud of boot on uneven floorboard — I could feel
the sensations in my teeth. I hated the way laughter broke
out unexpectedly. I hated that I could feel it buzz behind my
eyes after it had stopped. I hated that I needed quiet
darkness to breathe, and that I didn’t understand why.

“An odd pain,” is what I wrote on the clipboard under “Reason
for your visit to the doctor today.” Simple enough. A few
weeks earlier, an ache had appeared in the middle of my
skull, spread out against the backs of my eye sockets and
hadn’t left. It felt vaguely strange to blink, like there
wasn’t enough cord slack to lower the blinds. What’s this
thing doing behind my face?
I wondered.

“When did these symptoms start?” asked the nurse. She didn’t
seem impressed.

“Well,” I started. “It’s weird. One night, maybe three or
four weeks ago, I just never went to sleep.” I described how
I was wired at work the next day, but not drowsy. At some
point following the insomnia I noticed my heartbeat and
couldn’t un-notice it again. It pounded day and night — my
body’s version of the neighbor’s television, thumping through
the wall.

“But I haven’t felt well for a while, it’s just this weird
twitch thing has come on and now I feel like I’m angry all
the time.” Actually, what I felt was bloody, murderous rage,
ready to unleash itself at a moment’s notice, or on an
unsuspecting subway performance artist violating my
perception of acceptable volume.

“Anything else?”

It had become uncomfortable to make eye contact with people,
so I moved about in a squinty, half-lidded stupor. The nurse
typed, and I hunched over and let my focus rest on the floor.
Damp spots appeared on the chest of my paper gown.

She took my blood pressure and I considered asking her if she
knew what was wrong with me, if maybe it was obvious.
Maybe I really have gone insane. Maybe I don’t have
to go back to work
.

The doctor breezed in and got right to it.

“You have Grave’s Disease.”

Blink.

“OK.”

“It’s not like it sounds. It won’t kill you.”

OK!

He was small and thin, with a kind face and a slightly
oversized lab coat. He blinked at me and I thought, Peter
Rabbit!

Marcos Chamizo / BuzzFeed

This wasn’t the first time I’d received an
anticlimactic prognosis. A few years earlier, I had seen a
different doctor about the Terrible Feeling I experienced
sometimes. It would happen mid-email at work, letters on the
screen blurred and didn’t clear when I blinked. An
overpowering clamminess would take over and the thing I
needed more than anything in life was sugary liquid, poured
down my throat in huge, gulping bursts.

Labs were run and I received a phone call. Nothing was
imminently the matter, but it was possible, that doctor said,
that at some point in life I could develop a thyroid problem,
one where my thyroid levels were too high. It was also
possible something might be off with my blood sugar, but I
didn’t fit the profile for type 2 diabetes, and it would be
very unusual to contract type 1, or autoimmune diabetes, at
my age.

But this time, my “thing” had a name.
Grave’s Disease is strange. It’s an autoimmune disease of
too much thyroid hormone in too small a space. The body
responds in confusion with antibodies that attack thyroid
production, and the thyroid gland can no longer regulate
what’s happening. Its origins are
vague. Sitting in Dr. Rabbit’s office that August
morning, the inconclusive phone call from years prior felt
prophetic. Here I was, gowned and with a thyroid problem,
just as the other doctor thought I might be.

I had more questions. I wanted us to go through and write all
the answers down, one at a time.

“Is this the reason I’ve been having all these weird
things for so long?” I asked the kindly-eared doctor.

“It’s possible,” he answered.

I shuffled around the room picking up my things while he
wrote out two prescriptions, one to lower the production of
my thyroid, and the other to slow my heart rate.

I held the pieces of paper in one hand and lifted the other
to Dr. Rabbit, as though I were going to high-five him. “So
this will fix it?” He smiled with his mouth shut and opened
the door. For a moment, I was aware of how I looked — a
sweaty, anxious patient who’d darted into a medical office
after weeks of alternating melancholy and mania. I was
someone who’d been given enough of an answer, and now it was
time for me to go.

“You’ll notice a change in two weeks,” he said, and then he
was gone.

“A change in what?” I thought. My health? My heart?
The insanity I’d carted along sidewalks and into doctor’s
offices for the past several weeks, talking quietly to myself
in public bathrooms, saying out loud, “This will go away?”

I dutifully swallowed my two little pills at noon each
day, and each time I pulled the bottle out of my purse, I
felt a pang of something like relief. There is a name for
this
, I’d think, as I unscrewed the cap. And I am
taking care of it
, as I swigged from a water bottle. This
was why I had a sweaty chest. It’s why I felt nervous and sad
and intolerant of the heat. It explained the heart
palpitations, the weight loss, and the inexplicable vision
changes I had playing tennis. If I ran too quickly after a
ball, if I were on one side of the court looking over, I saw
the other players move after they really did. My lens was out
of focus, and I swung at balls while they were still feet
away.

“You’re so lucky!” people said when I told them about my new
diagnosis. “They figured out what was wrong and were able to
fix it. You’re going to feel so much better!” I smiled and
nodded and said things like “Yeah, what a relief,” partly
because they were true, but mostly because there was nothing
else to say.

I thought that if I could just get through to the part where
it all made sense, the part where the fatigue and irritation
cleared away, then I would be lucky. Grave’s wasn’t
going to kill me. Nothing was going to rot or fall off. My
immune system was a little jumpy, a little over reactive, but
manageable overall.

I limped along toward that threshold for 18 months. The
anti-thyroid medication settled things down to where I only
had to take one pill, instead of two, and I eased off heart
meds entirely.

The occasional kind listener suggested support groups as a
place to air my grievances. I couldn’t do it. I wanted to
complain to people who loved me, and then pretend like
everything was fine. I didn’t feel sick enough to find solace
discussing rashes and chronic diarrhea with strangers. I
didn’t look sick enough to feel comfortable using the
word “disease.”

It’s not that I wanted something more grim to be the matter,
it’s that Grave’s felt like such a mediocre excuse to be
feeling as poorly as I did. The diagnosis simply didn’t come
with enough meat on its bones to feed a larger purpose. It
was just a disappointment, not a tragedy. Like bad teeth, or
The Life of Pablo.

At some point, I decided that if I couldn’t feel well
all the time, then I would nail down precisely what had
caused my unwellness to begin with. If the diagnosis was the
end, I wanted the beginning. So, I began to Google — first
casually, then pathologically. I skimmed listlessly for
hours, entranced by possibility after possibility. Every
patch of inflamed skin or stomach cramp, every joint ache,
every muscle twitch, every canceled plan for exhaustion, I
could stitch them together. I could make them fit a
narrative. The antibiotics I took for ear infections as a
child. The gluten in my diet. The
leakage of nutrients from my guts. The intestinal
parasite I’d picked up during foreign travel.

There had to be a reason this had happened, something to
explain what went wrong and a perfectly calculated
combination of diet, exercise, willpower, and drugs to fix
it. I was going to find it, and never feel unwell again. I
stood in bookstores in front of all the sections that
promised to heal X by doing Y. The only thing I couldn’t see
was the reason for the condition I had, and the answer was
there was no answer.

Marcos Chamizo / BuzzFeed

In the early spring of 2016, a few days before a
doctor called to say I had diabetes, I wet the bed. The warm
pooling of urine woke me up and I paused for a moment, before
I reached for a glass of water. I was so thirsty. I pulled
the sheets off, left them in a pile on the floor, and went
back to sleep on the mattress.

What I had — and what I had had, for years, the doctor told
me — was latent
autoimmune diabetes in adults (LADA), a slow-progressing,
later-in-life form of type 1 diabetes. Origins unknown.

The months that followed passed in fits and pauses. One of my
fingers was always bleeding. I left dried brown spots on my
keyboard, the light bathroom light switch, my sweaters. I
discovered I’d turned the dial on the needle in my blood
glucose machine too high, and it went too deeply into my
finger pad with each stick. Little sores piled up from
insulin injections. I learned to poke my right finger, to
give my left fingertips a break.
I went off gluten. I stopped drinking. I went to therapy.
I took leave from work. I had a new diagnosis, but where was
the goddamn answer?

In the sixth grade, I once waited in the Florida sun to be
picked up from school. No one came. I walked home to an empty
house. Hours later, two police officers rang the doorbell and
asked if I knew where my mother was. I did not. That
afternoon, a plane had crashed, and the crash had killed my
father. Life was different, after that, and there was
something clear to point to when I needed an answer. What I
felt now, this tedious blend of common-sounding things —
fatigue, anxiety, nausea — was not that kind of interruption.
It was not that kind of pinpointed loss. It simply dragged
on.

By Thanksgiving of 2016 I was averaging two nights a
week prostrate on the floor, drooling from a blood-sugar
crash, and I begrudgingly decided to begin life with an
insulin pump. They had decreased in bulk and absurdity since
the early aughts, and while my pump required use of a pager
akin to Dr. Mark Green, it also meant there were stretches of
time throughout the day when I could put aside the business
of figuring out this whole diabetes thing and focus on
something else.

“I feel so much better,” I said, and meant it.

There wasn’t a day when I’d completed treatment, or received
a breathless phone call from the doctor’s office to say that
my labs were in and I was clear. There wasn’t a marathon
finish line crossing, but there was a slow, unsteady, boring
reconfiguration of what it meant to do the things I needed to
do every single day.

I read obsessively into the lives of athletes who lived in
near-constant pain because of their craft, their art, and I
cried, embarrassed, over the indignity in having something so
unglamorous as the root of my ills. All bodies shut down,
eventually. Mine had started early, but there was no great
battle. I didn’t fight, then win. What I did do in painfully
slow order was accept that the inner workings of the body
would not be dictated on my complete terms. The thing that
had operated automatically, effortlessly, for most of my life
now required clunky manual interventions – insulin
injections, antithyroid agents – without a full satisfaction
guarantee.

I still take to the internet in occasional fits of panic. I
still look for clues to explain how I got sick and how to
never, ever feel unwell again. I still wish for complete,
totalitarian certainty.

I’ve found none of those things.

Instead, what I have is a more complete perspective on what
it’s like to feel good, and what it’s like when there’s kind
of something wrong with you, but also, you’re OK. Glorious,
even.



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