My Fibromyalgia Diagnosis [CC]


I am in pain. Every second of every day, I’m in pain. Sometimes it’s a dull ache at the back of
my mind. Other times it’s a throbbing, stabbing agony
that keeps me bedridden. And I’m always exhausted. Next year will be the 10th anniversary of
my official diagnosis, and I *literally* have forgotten what it feels like to be energetic. It started in seventh grade. Sometimes I’d experience this random, shooting
pain in my leg and I wondered, “Did I somehow twist my ankle during recess?” (I’m so athletic, you know?) *laughs* *audience laughs along* But the pain
would kinda come and go, so I ignored it. Just growing pains. Nothing to see here. No problems. Nothing to worry about…. Going into the 8th grade, I started to feel
generally unwell. I’d have an intense stomachache, a pain
here or there, a crippling headache.… So I started going to the school nurse more
often than she deemed “normal.” And I’ll never forget when she finally turned
to me, she sighed in frustration, and asked me, “Have you been diagnosed with anything
mentally *wrong* with you?” *audience groans in shock and sympathy* I’ll
never forget, because that’s when I started to wonder myself. “I must be a hypochondriac! I’m just looking for attention. I’m just making it up. It’s all in my head.” I started to ignore it. To stop mentioning it. To pretend it just wasn’t there. So I joined color guard in high school (Uh,
you know, with the flags and everything with the marching band?) and I absolutely loved
it! It was great! But toward the end of my second season I started
having wrist and shoulder pain too severe to continue. So I joined the choir, but then I was struggling
to stand for the few hour performances. I began to feel more exhausted. I started to go to the choir and band director’s
offices to rest during free periods. Pretty soon I started seeing a chiropractor
for back pain. And this is all, you know, beginning of high school. I felt like I was hanging on by a thread and
it was really hard. But I got through it and I graduated! The first semester of college, I got the flu. A REALLY bad flu—one that I had to go to
the ER for. And…I just never really got better. So I’d like you all to imagine your worst,
most devastating flu. And…you never get better. There’s no bouncing back. It doesn’t go away. No Tamiflu. You don’t wake up in a week and go, “I feel
great!!” My body ached and those pains I’d felt
for years intensified. They’d now shoot up and down my body like
fire and lightning mixed into this pure hell. I felt nauseous all the time. I was beyond exhausted. This…this was a new realm of agony. I began missing classes when the pain in my
legs and back was just so severe I was unable to stand. I started getting “medical escort” rides
from campus security to get to class. Um, the campus is really hilly and I just–I
couldn’t make it. I’d sit in the back of their patrol cars
and I’m literally locked in! And there’s this metal grate between me and
the driver. So they’d ferry me off to class and they’d
glance at me in the rearview mirror. I’d feel embarrassed because here I am,
this like…outwardly healthy-looking college brat that the just have to ferry off to her
classes. *laughs* Then I’d hobble into the building
where I’d often be late to class because the football team would inevitably be using
the elevators… Still haven’t figured that one out but *audience
members laugh* In class, I’d sometimes have to lie on the floor to take notes because
my back would be spasming so hard and it was just so painful. Fortunately my professors were great and they
were like, “You know what? Do what you need to do. We’re gonna get through this…” During school breaks, then, I’d see doctors. So my spring break experience? *Chuckles* Was going to doctors, many, many
doctors, trying to get them in while classes weren’t in session. Over the years, I’ve had dozens and dozens
of blood tests, biopsies, MRIs, cat-scans, EKGs, EEGs, spinal taps….*ugh* I’ve seen
the endocrinologist, neurologist, psychologist, gastroenterologist, and then *finally*: a
rheumatologist. I was 18-still a freshman in college-when
I got an answer. The test was almost infuriatingly simple. *chuckles* They just touched me here and there
throughout my body. Testing tender, inflamed points throughout
my body…. And it’s Fibromyalgia. I was so happy. *chuckles* *audience chuckles softly* I remember
chattering to my father all the way home about how happy I was. If you haven’t waited years for a diagnosis,
and haven’t wondered if you’re crazy or weak or just “sensitive,” maybe you won’t
understand that feeling. But I was *so* relieved. Those of you that might be good at math or
whatever, you might be calculating– I waited *6 years* for that moment. And half of the time, I wondered if it really
was all in my head. But that relief soon turned to a really devastating
grief. Because a quick online search showed me- it’s
not as simple as just getting a diagnosis. It reads: “Incurable. Treatment can help, but this condition can’t
be cured.” So…no magic wand. No fixing me. And that’s the reality for about 10 million
Americans with Fibromyalgia. Unfortunately, my story is not uncommon. At all. Those with invisible disabilities often go
through *years* of misdiagnosis or being written off completely. Many are told “It’s all in your head”—often
by medical professionals even. I stand here, on this stage, in front of all of you. And I’m sure I look fine. But I’m not. And I probably never will be, realistically But… I haven’t stopped trying. I can’t. I *refuse* to stop living my life, even if
it’s sometimes very, very hard to continue. In my junior year of college, I reached my
lifelong goal of studying abroad. Two times. *crowd bursts into applause* I graduated with
honors with a self-designed major. Learned Japanese. Worked at the Smithsonian Institute. Lived and worked in Japan for three years. Joined a Japanese choir and competed in a
national competition. And got married to my best friend back there!
*crowd cheers and whoops!* Fibromyalgia is not obviously not fun to live
with. I’m constantly in pain; I’m always exhausted;
It SUCKS. But it has taught me some things. I learned who my real friends are—the ones
who will stick with me even when I have to cancel plans for the 3rd, 4th, literally *5th* time. The ones who will just be there even if I
need them to come to a doctor’s visit to hold my hand. Those people. I learned that I can trust myself and my instincts,
to be my own advocate. I learned that I will push a broken body to
its limits rather than give up. And that I can get through what feel like
insurmountable challenges. I also learned to never, *ever* assume that
someone who looks “fine” isn’t dealing with something enormous. I’ll never say that I’m *grateful* for
fibromyalgia. I would never, ever say that. But I am grateful for what I’ve learned
about myself because I learned that I am strong. And I’m a superhero. *crowd chuckles* And I’m not giving up. Thank you. *crowd erupts into applause and cheers*

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