Chapter 24

Spoiler Alert

I stayed on the Cymbalta for a few months, but began to seriously mistrust it. I was taking the drug to mitigate my most debilitating fibromyalgia symptom: uninterrupted, head-to-toe pain. In theory at least. In reality it was doing no such thing; the pain got worse. So bad that people were casually mentioning its debilitating affects to me in every day conversation. “I can tell something’s wrong,” a coworker said, “instead of turning your head to talk you turn your whole body.”

I was climbing out of our Corolla at a showing, our Realtor stopped keying the code in the lock box and asked, “Did you hurt your back?”

“Nah,” I shrugged it off—but not literally because that would have been excruciating. “I just hurt a lot, and it makes me move funny.”

There were other problems too. So many I had trouble remembering them all at my doctor’s office. Intensifying pain, fluctuating blood pressure levels, elevated pulse, shortness of breath, weight gain, heartburn, diarrhea, stiffness, muscle cramps, muscle weakness, fatigue…  But the pain. The pain was the one symptom my body would not let me forget.

My new primary doctor, Dr. Sheridan, was a really busy woman, and she only saw patients part-time. So when I couldn’t get an appointment with her in a timely fashion, I would take an appointment with Susan, a nurse practitioner in the same office. Susan humored me for a while and let me ask questions like, “What about toxic mold. Is that a thing?” and “What about celiac?” and  “Are my cortisol levels normal?” 

Of course, I had to preface all such questions with a delicate reminder to Susan that I couldn’t possibly know a damn thing about medicine. I’d say something like, “This sounds far-fetched, but my Great Aunt Daisy said I should ask you…” Because I knew for certain if I asked why I felt like I was dying, she—like most every other doctor I’d seen—would treat me as a hostile witness.

I don’t know why chronically ill patients are seen as a threat to so many medical professionals, but I can absolutely vouch for the fact that we are. And one morning, I made a grievous error and watched a mostly pleasant and caring nurse practitioner morph into a yellow-eyed, jagged-toothed, thin-skinned ego in a white coat.

See, a couple nights before the encounter, I’d been speaking to a chronically ill friend on Twitter. I mentioned my anxiety over my upcoming appointment with Susan, how I’d been lying awake the past two nights stressing over what I needed to say and how I needed to say it in order to get help. I was so desperate for relief that I routinely obsessed over upcoming appointments, scared I’d say something wrong, turn another doctor against me, and further complicate my condition. “I’ve had so many tests,” I whined. “They all come back normal.”

“Have you asked your doc about something seronegative?” he tweeted to me. “My RA didn’t show up in blood tests.”

That seemed like maybe it could be something, another avenue to explore in my medical mystery-thriller of a life. The next morning after listing my symptoms in descending order of how miserable they made my life, I said, “Is it possible we’re missing something because I’m seronegative for something?”

Susan’s expression immediately changed. She let out a smarmy, “Heh” and her lips curled in amusement. I don’t remember if she conveyed the next message to me verbally or exclusively through body language, but I received it loud and clear. “Well, somebody’s been reading WebMD.” I realized my mistake right away. I’d said “seronegative” instead of asking with the appropriate amount of deference and ignorance whether people ever, maybe, sometimes, sorta caught scary sick problems that didn’t show in the liquid red stuff.

I went from hope—however slight—of convincing Susan to keep looking for a real answer to utter despair in seconds. “It’s just that I can’t help my husband with anything anymore. He has to do everything for me.”

I was, at this point, disabled. But because I didn’t use a wheelchair, I somehow felt the word was off limits to me. It’s really too bad too, because I think if I had been strong enough to talk about how useless my body had become, I would’ve received better care. Instead, doctors and nurses like Susan assumed “I can’t walk very far anymore” was me in denial of hitting my mid-thirties and loving ice cream more than exercise.

I didn’t feel entitled to weight loss and health without working for it, I was just too weak. I couldn’t even single-handedly hold a coffee carafe. In order make 12 cups, I had to pour the water in using both hands. And still my arms trembled all the way from the faucet to the coffee maker’s reservoir just inches from the sink. When I drained the macaroni for my Kraft Dinner into the colander—one of the few “meals” I could still make on my own—the boiling-hot water rippled from the unsteadiness of my grip. I was so terrified of burning or cutting myself in the kitchen I resorted to pretending I wanted to eat cereal and microwaveable Lean Cuisines all the time. 

When I thought about the vitality I’d lost in the previous year, it was in stark contrast to the person I was. The woman who used to put in eight hours at work, come home and complete Jillian’s 30-Day Shred, and write for freelance clients for three or for more hours after dinner. A tear rolled down my cheek. And then another. And then another. And then I started sniffling. Susan pushed off the desk, rolling on her stool across the exam room and grabbed a box of tissues from the opposite counter. Then she rolled back and held the box out to me. “Is everything OK at home? Do you feel safe?” she asked. “Is your husband not supportive?”

“What?!” I said through my sobs.  I knew where she was going, and I was appalled. “That’s not what I’m saying at all.” I cried harder and longer, my spastic diaphragm forcing me to suck back words as I tried—and failed—to explain. I gave up and let the hopelessness swallow me for several minutes. How was I ever going to get help when I couldn’t explain myself to these people? Was I that bad at talking about my symptoms? Or was every last person in the medical profession hellbent on twisting my words into something easier to understand?

I took another tissue and dabbed at my eyes. Then Susan let me have it. The next day, I wrote this blog post:

September 30, 2016

Sometimes Assholes Are Right: A Fibromyalgia Life Lesson

“You are not weak. You do not have some personal shortcoming to overcome. You are sick.”

That’s the straight talk I got at the doctor’s office yesterday. And with every admonishment, I felt like the nurse practitioner was whacking me with a really hard, really stale baguette. It hurt on a basic level, like being hit with any hard object would (especially in my condition) but there was the added humiliation of knowing that I armed her with the stupid baguette.

***

I was diagnosed with fibromyalgia in October 2014 by one of the worst doctors I’ve ever had the displeasure of meeting.

He was the kind of doctor you’ll hear Spoonies talk about often: arrogant, dismissive, sometimes even combative.

After dropping the fibromyalgia diagnosis on me, he handed me a pamphlet and said “Here, you can read about it and I’ll be back in a minute.” He left the exam room.

I opened the 300-word brochure and stared blankly at the glossy pages. When the doctor returned, he told me he was putting me on Cymbalta and asked me if I had any questions. Of course I didn’t have any questions; five minutes alone with a pamphlet was hardly enough time to process what I’d just been told.

***

After a brief tangle with my health insurance provider regarding preauthorization for Cymbalta, I went on the drug.

I could write a novel about the six months I was on Cymbalta. It was just so horrible. I’m not a huge fan of trading symptoms for side effects anyway, but this SNRI was fucking with my brain chemistry in ways I never would’ve imagined possible. I didn’t feel like myself, I was gaining weight fast, I was short of breath, I’d have mini breakdowns over nothing. Instead of feeling like my overactive nerves had been gently persuaded to calm down, I felt numb. Everywhere. The lack of sensation only made me more anxious.

When I brought these concerns up at my next appointment, my doctor didn’t seem too interested. He looked up from my chart just long enough to tell me that if I went off the drug or lowered the dose, I would suffer.

When I tried to ask more questions–because, you know, my health is kind of important to me–I got the “difficult patient” treatment. To him every question was a personal assault on his intelligence, not a quest to learn more or find a better treatment option.

It was my last appointment with him.

***

So back to yesterday and my current doctor calling me out for being in denial for two years: it was a really, really hard appointment for me. For significant portions of the extended visit, I couldn’t talk because I was too busy wiping my nose and eyes with a tissue.

I am disabled now. I still can’t say that out loud yet; I can only write it. I’m not in a wheelchair, if that’s what you think when you hear the word disabled. I’m disabled because I haven’t driven in over a year for fear of injuring myself or others. I have to sit on a shower chair, and sometimes can’t lift my arms above my head to wash my hair. I can’t walk very far or very fast or sometimes even at all. I can’t think straight because the pain is so distracting. I can’t think straight because I am not sleeping at night.

***

Plenty of things have contributed to my two-year denial. For starters, because that first doctor was an asshole and a bad listener, I also wanted him to be wrong about my diagnosis. I mean, how could someone who wanted me to be complacent and follow orders possibly know what was wrong with me? He never listened to me!

I had test after test after test to look for the “real” source of my chronic pain, each time hoping something would pop up positive and I could mumble a self-satisfied “neener-neener” to the jerkwad.

I also internalized a lot of skeptical messages about fibromyalgia, despite outwardly defending myself and other fibromyalgia patients against them.

That’s not a real diagnosis.

You wouldn’t be sick if you could handle stress better.

You just want attention and pain meds.

Doctors decided to call it fibromyalgia because “female hysteria” is no longer politically correct.

Also, I didn’t want to be sick. I didn’t want to be in chronic pain, so I pretended I wasn’t whenever possible. And I didn’t come up with that coping mechanism on my own. For years people have been telling other people to “just ignore the bee and it’ll leave you alone” and “just ignore the kid that’s picking on you and he’ll stop.” So why not take that same approach with pain?

***

I started yesterday’s appointment like I always had. “I keep continuing to decline.

“My heart rate…

“The dehydration…

“What about the possibility of something seronegative…”

Eventually, my doctor started getting through to me. “You have to deal with this chronic pain. Your muscle weakness, your high blood pressure, your erratic heart rate–those things are not happening independent of your pain. They are happening because of it.”

I nodded.

“Fibromyalgia is a real thing, not a character flaw,” she pressed and waited for me to look her in the eye. “It has an ICD-9 code and everything.” She searched my face for signs that I was getting the message.

Finally, I confessed that I knew my refusal to try different medications because of my Cymbalta experience hadn’t helped me at all and was likely making my life worse. I was ready to try.

“You’ve probably read a lot on the internet. How do you feel about trying gabapentin?” she asked, handing back the baguette.

***

Hi. My name is Emily, and I am sick. I have fibromyalgia. That asshole doctor was right.

…but he is still an asshole.

Spoiler alert: It wasn’t fibromyalgia.

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