Why Getting a Diagnosis Still Didn't Give Me an Answer


As as of July 2016, I was a relatively normal 23-year-old girl. I was looking forward to returning to school to continue working on my undergraduate degree the next month. I lived with my boyfriend and my best friend (my cat). I drank on the weekends with friends, enjoying the last moments of summer vacation on boats spilling over with sunshine and lake water. I was happy to be me, and I had everything that I needed. Then, on August 1st, everything shifted.

old picture of a dad throwing his daughter in the air while swimming in a lake

I woke up with slight cramping in my pelvic and upper thigh area. As a female, familiar with the unpredictability of my reproductive system, I waited three days as the pain slowly got worse, assuming it would soon pass. The day before I called my OB/GYN, I remember being at work, a wave of pain ripping through me, staring in wonder at the desk my white knuckles were gripping just to keep from collapsing. This was my first moment of fear, my first genuine understanding that something was wrong.

My friends told me it was probably just an ovarian cyst that had ruptured. My OB/GYN performed an internal sonogram and pelvic exam, and she told me I either had a yeast infection or UTI. The pain shifted and starting taking over my lower back and shooting down my leg, so I went to the chiropractor. He ordered an x-ray and MRI, but told me I most likely had inflammation in the facet joints along my spine. None of these things were true.

After that, I was passed along to my primary care doctor for blood work to check on systemic issues. The lab results led to liver and kidney ultrasounds, additional blood work and other lab tests, a referral to a urologist, more lab tests, a second ultrasound, a second x-ray and eventually, nothing. I went back to my primary care doctor, and brought up a few new issues I had discovered – tactile pain in my arms, legs and torso; issues with my memory, concentration and cognitive functions like finding the right words; vertigo and exhaustion – and he gave me what I had spent months desperately searching for: a diagnosis.

Since that first day in August, I had spent at least 100 hours reading medical journals and reputable online articles, using time I did not have as a busy undergraduate student with three jobs, trying to match up what I was experiencing with a name. I had spent thousands of dollars on imaging tests and lab work and appointments with specialists and my doctor, using money I also did not have, hoping that trained professionals could find the answer I couldn’t. All I wanted was one little word, a simple solution, that would make me feel like a normal 23-year-old again. What I got was fibromyalgia.

It’s hard to explain why I left that final appointment without a single tear in my eye after having spent months leaving every visit sobbing, but my mind felt either too busy or too still to react. I knew what fibromyalgia was; it was one of a thousand different diagnoses I had researched. I knew it had no definitive diagnostic tests, no cure. I knew that this was potentially, and almost certainly, something I would deal with for the rest of my life.

I like to equate what I felt then and what I continue to feel now with a cross-country race. You keep running and running, knowing you will reach the finish line, pushing through because you are only moments from your goal. Then, you see the end, adrenaline pumps through your body as it helps you rush those final feet, and you leave the race exhausted but euphoric.

That is what I was doing balancing school, my three jobs, friends, my boyfriend, family and this relentless, life-consuming pain; I was living off of that short burst, that flood of adrenaline. And the diagnosis was supposed to be my finish line. I was supposed to leave the race a little worn down, but ultimately happy to look back on the memory of what I had gone through, knowing I had conquered it. Instead, I reached the end, all my reserves tapped out, and fibromyalgia told me I had to keep running, indefinitely.

“At least it’s not Hep C!” was the text message I sent to my boyfriend right after I was crushed by the (actually very good) news that my liver enzyme levels had gone back down to near-normal levels and were likely unrelated to my chronic pain. At least it’s not progressive, at least it’s not terminal. These are the things people say to me to try to make me feel better, and they are what I say to myself to try to maintain a positive approach to this illness. I have read similar sentiments in other testimonials, and one response has stuck with me: “It still feels like a death sentence.”

Every day, I have to mourn the loss of my old life. My boyfriend and I used to go on walks through the beautiful back roads of our neighborhood, sometimes walking for five hours at a time. Now, when he wants to go for a walk, I have to remind him how limited I am. We have to go slow and sit down along the way, and more than 30-45 minutes leaves me limping and in pain for the rest of the night and sometimes into the next day.

I was once obsessively dedicated to school work, and I aimed for perfection in every paper or presentation I had due. Now, I struggle through concentrating on writing, I am too exhausted to study as hard as I used to, in too much pain to focus and I have to remind myself that it is OK to do a little less. My boyfriend tells me, “Sometimes good enough is good enough.” I have a hard time accepting this, and I fight it, and I often lose, but I know he is right.

Still, there are some parts of my life I cannot let go of, pieces of me that are the foundation of my identity, like my dreams of one day getting my PhD. I used to want to graduate with a 4.0 and excel in graduate school and become a leading expert in my field, but maybe just getting there is all I can do. Maybe good enough is good enough, and maybe that’s OK. My plan is to continue fighting though. Even when it knocks me back again and again, I still want to live my best life whenever I can.

There is a quote I love from Jenny Ryan, who runs the Cranky Fibro Girl blog:

“I know, down to the marrow in my bones, what it’s like to get up every damn day and choose to show up for this raw, unvarnished, ugly life. I know what it is like to put one bare foot in front of another, navigating the razor’s edge of existence. I know, more than most people, what it really means to choose life.”

I am now a not-so-normal 24-year-old girl who finally got her diagnosis and still does not have the answer. But choosing life, in spite of the pain and exhaustion and despair, seems like the closest I am going to get. And slowly, through gritted teeth and clenched fists, I am learning how to live with fibromyalgia.

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