“I feel so weak physically right now. My body has that feeling you get from throwing up for days or something. Even putting my fingers around this pen hurts. My wrists, elbows, back, legs, everything. What’s wrong with me? What’s happening to me?”
- Diary. December 24th, 2000
At some point between returning to Michigan from New York that summer and the Christmas morning in Ohio when I woke up immobile, my body had turned on me. See, I don’t know where the story of how I got sick or when I got sick or even why I got sick starts. I think it started that summer, the summer of 2000. But maybe it started earlier, like the summer before, when I’d just graduated from boarding school — the only place I’d been happy since my father died — and decided to eat a lot less and run a lot more.
Like if I stopped eating, I could stop growing up. Like if I kept running, I’d get somewhere.
I hated my body and punished it, and it hated me and punished me back. Is that what happened? That’s the thing about getting sick the way I got sick: nailing it down. Sometimes it seems like the story started when I was 14, or maybe even earlier. It gets mixed up with other vague diagnoses, and other parts of myself I learned to name months or years after I started to feel them, like being gay, like depression, like ADD, like being a “writer.” I know that I am these things, but I don’t know why, and I don’t know if I tell stories like this one to convince you that they’re true, or if I’m the one who needs convincing.
Doctors are not, it turns out, vending machines. You can’t just insert a collection of symptoms and expect them to dispense an accurate diagnosis and its accordant remedy. Doctors are also just people and they don’t know everything because not everything is known, and maybe not everything is meant to be known.
But we want to know. We want to name our pain and desire and we want language that describes what happens to our bodies, and we want that so badly that we’ve come to need it, too.
In the spring of 1999, during my last months of boarding school, I started working out. This was a big deal for me. I’d always been naturally thin and hopelessly clumsy, so I was never a great athlete and nobody told me I needed to exercise, until I stopped getting taller and started taking the pill and the world and I suddenly perceived my body to be a final product in need of care. I’d never been very good at being a girl, but I read magazines and paid attention to what the other girls talked about and I knew that maintaining the size of one’s body was a crucial aspect of womanhood.
Exercising started a conversation with my body I’d never had before. This dialogue was so certain and understandable in a way nothing else about life had ever been, back when my body was just a vessel that carried my soul and brain around. Soul and brain stuff was murky and unpredictable: writing, relationships, love, friendship, all of that. But the body was science, was weights and measures, was physical facts, and I liked that.
What I hadn’t learned yet, but would soon enough, is that even the body is not meant to be known.
I started at Sarah Lawrence in the fall of 1999, an irritable bag of bones, and right away my depression hit me hard in a way it hadn’t since early adolescence. I had a hard time making friends. I couldn’t sleep. I was constantly on the verge of tears. I ate Slim-Fast bars and cucumbers all day and at night I ate cookies and entire cakes and sometimes threw them up. I spent every weekend in the city with my friends from high school, going to museums and off-off Broadway plays, eating long lazy brunches and drinking at sketchy East Village dives that sold ecstasy and served teenagers.
Then I dropped out of college and moved to Manhattan and decided I could overcome my depression and everything by telling everybody I was happy, listening to a lot of Belle & Sebastian, writing in my diary on the subway and eating “whatever I wanted.”
But I’d lost sight of “what I wanted” already — what did I want?
I wanted somebody to tell me how to be a person.
So I waited tables, did internships, drank a lot, gained 15 pounds and completed an “Independent Study'” for Sarah Lawrence which involved writing a screenplay about the evils of anti-depressants inspired by the Magnetic Fields’ “69 Love Songs.” I slept with a 27-year-old law student who didn’t read books. I didn’t feel any closer to figuring out how to be a person than I had at Sarah Lawrence, so I transferred to the University of Michigan, in my hometown of Ann Arbor, because it seemed like a less expensive place to lose my mind.
After arriving home, I had about a month before I’d move into the dorms, which wasn’t enough time to get a summer job but was enough time to persistently overanalyze my feelings (like my relationship with aforementioned 27-year-old law student) and obsess over things (like my abs). I was always tired but could never sleep. I drank half a bottle of bubblegum cough syrup every night to get to sleep, and popped workout pills and guzzled Diet Coke to stay awake the next day.
I felt like everything was out of my control except this one thing — physical fitness — and if I could excel at that, I’d be okay, so I took a lot of spinning and yoga classes and read a lot of fitness magazines.
I was being flexible, literally and figuratively. When other sources of stability, like the close friends I’d made in boarding school who now lived in New York, weren’t around anymore, I found something new to keep me stable: exercising.
But my body had other plans, because this is when the pain started like a prank the world was playing on me. It started in my knees, and it felt like my knees were trying to become lighter, and pressing out on everything around them, like somebody had replaced my knee with a giant cold metal bolt and the bolt was malfunctioning. Touching the joint was like touching a bruise. I assumed it had to be an injury from some kind of athletic activity, even though nothing about it felt like those kinds of injuries. It felt more like something invisible was swollen.
In the ensuing months I’d often wish I’d never started exercising. I’d fantasize about three-years-ago me who wouldn’t have given a shit about losing mobility. I needed something else to control, now — I picked schoolwork, of course, but also tightly controlling everything I ate, and writing it down.
Over a decade later, I’d see Battlestar Galactica for the first time, and seeing those pulsing red spots of light tracing Sharon’s spine was the first time I saw something that looked how I’d felt that year. What’s more is that it must have always been that way, right? Her spine must have always been like that, even before she knew she was a Cylon. This thing can be inside you for so long before it shows itself.
I started at Michigan in September 2000 and from the get-go it was clear I’d never really fit in there. I hopped from friend to friend, trying to find somebody who made sense: Sabrina the beautiful smart manic pixie dream girl from the Residential College who eventually faded ’cause she didn’t live on my side of campus, Katie the bitchy ex-cheerleader, Marsha the wide-eyed Jewish virgin from Maryland, Stacey the anorexic from Phoenix who was always doing Tae-Bo in the common room.
I had a single, so I didn’t have to deal with roommates, but the noise in the hallways kept me up all night and construction noise rattled me awake early every morning. I’d always battled insomnia and constant fatigue, and the less I slept, the more my knees would hurt, the more I’d feel like my entire body was swollen.
Although I’d waited my whole life to escape Ann Arbor and my Mom, this situation made her proximity a welcome relief. I was 19 years old but hadn’t needed my mother so desperately since the months after my father died.
I started sleeping at her house sometimes and taking the city bus to class, further distancing myself from any kind of social life I could have at school. My Mom, like me and everyone I talked to about the pain, figured it had to be the result of some mistake I’d made at the gym, but that hypothesis was increasingly impossible to prove.
I was just that smart artsy girl who’d gone to boarding school and lived in New York City by herself, some exotic animal amongst flocks of neat suburban exports on their own for the first time. After Sarah Lawrence and boarding school, I’d gotten used to having friends who’d endured psychological trauma and therapeutic treatment, who had dysfunctional or non-existent relationships with their parents and hometown, who’d made self-destructive decisions for all the wrong reasons and then made art out of it later. I’d never been surrounded by so many normal children from normal families in my life and I didn’t know what to talk to them about.
I was lonely like a knife cleaving my chest, lonely like an empty hole in my gut, loneliest while walking home alone from the library, past groups of grinning, raunchy boys in fitted caps and t-shirts, girls with straightened hair and made-up faces in tiny shorts and skirts, past their shimmering slender legs, past their easy laughter and their exaggerated gestures of friendship towards each other. What did they have going for them that I did not. Why was this so easy for them.
One night Katie and I lurked outside the dorm room of two guys we’d spent the night hanging out with to see if they would talk about us — and they did. She’s really hot, they said of Katie. But such a bitch, though. They laughed. What about Marie, though? One guy asked. She’s super smart, one guy said. Really smart, yeah, and funny, said the other. Not like I’d wanna see her naked or anything, said the first guy, and then everybody laughed.
“I can’t believe they fucking said that about me,” Katie said, quickly, in the safety of the stairwell.
I wanted to punch her in the mouth because she could stop being bitchy if she wanted to but I’d always be ugly. Instead I went back to my room, wrote down my numbers for the day, ate three pieces of carrot cake, cleaned the knife, and then took it to my skin. It was the first time and not the last. It seemed like the thing to do and so that’s what I did instead, and it didn’t hurt like my knees hurt.
The pain was scary, sure, but what was more scary was not knowing where the pain came from, or what it might mean or turn into. The face of things to come.
Eventually I’d become best friends with a photography student named Emily shortly after she moved in to the single next door, an event which required flying her Mom in from Westchester to help move buckets of overpriced yoga pants from one end of the hallway to the other. Emily had money, a huge network of other cute well-dressed rich Jewish friends from the East Coast, and didn’t eat carbs. But she was funny and creative and smart and perceptive and loved Ani DiFranco and could make fun of the scene her friends were so earnestly invested in, and we actually clicked right away. Emily was beautiful and hot but she wasn’t skinny, and in her social circle, that was basically the worst thing a human being could be: not skinny. So that gave her some critical distance.
We talked about starting a Teen version of Vogue when we graduated, and I’d be the editor of words and she’d be the editor of pictures and fashion. (Eventually, Vogue beat us to it.) We were an odd couple but it worked, and I loved her and she loved me, and I hated me, and I hated me even more when we were around all her pretty friends with Jewish boyfriends who survived on diets of lettuce and mustard. But these girls were popular, and now that I was friends with Emily, they became friendly to me, and that was nice.
The only thing I had in common with most of my new friends, though, and the thing I’d never had in common with my former classmates, was an encyclopedic knowledge of calories and an intimate relationship with the gym. They wanted to go running and take cardio hip-hop at the CCRB. I’d tag along, feeling like a real normal girl with her girlfriends going to the gym. This I could do. I could do this.
Until I couldn’t.
I went to my classes, read my books, aced everything, impressed all my teachers. I’d always been good at what I was good at, I had that under control. When school or life got stressful I did what I’d done all my life to manage stress: I took a long walk or went on a bike ride. Ann Arbor was a great place for long walks ’cause I’d grown up there and, like all college town residents, knew where to go to avoid other students. The fact that I was also a student now didn’t change my desire to avoid them. If anything, it was amped up.
But my mind-clearing walks were becoming obsessive, mind-consuming meditations on pain. I couldn’t think about anything while walking besides how much my knees and lower back hurt.
Also, I kept getting larger, even though I hadn’t changed my eating habits. It was strange. At the time I thought maybe I was growing into my adult body, but later after my diagnosis and recovery, I’d go back to the wiry human I always was, and nothing like that would ever happen again. But back then I felt like I was pregnant with myself. I looked fine, of course — healthier than normal, probably. But I felt off. It just didn’t feel like my body anymore.
My Mom had hypothyroidism and described how she felt when it first kicked in: like I was gaining weight while sitting still. Coupled with my fatigue and anxiety, this inexplicable weight gain suggested that maybe I, too, had a thyroid disorder.
They tested my blood. It came back negative. I didn’t realize ’til we got the results back how much I’d been hoping for that to be the problem, just so that I would know what the problem was.
In the winter I started physical therapy at MedSport, a facility out by the highway overlooking an ice skating rink. I didn’t have health insurance, but my Dad had left money behind and nobody bothered to tell me how quickly all this “treatment” would burn through it — the price inflation on medical services wasn’t a thing I knew about yet.
My physical therapist didn’t know what was wrong with me, either, so he just walked me through a series of exercises no different than what I’d done when I had a personal trainer in New York and no chronic joint pain. I was jealous of the other patients who got hooked up to Iontophoresis machines with blue gel and little electrodes after their physical therapy sessions. Those machines seemed mysterious and therefore effective.
Mostly I wanted medical advice, for somebody to tell me where the pain was coming from and how to stop it from getting worse.
“If I run, will that make it worse?”
“Mmm, maybe stay away from that.”
“But I can use the elliptical trainer, right? I mean it’s like, no impact, so it couldn’t really make this worse?”
He advised I stick to swimming and take three ibuprofen every three hours. So I did, even though I hated swimming and the ibuprofen rarely made a difference. My skin smelled like chlorine and now it was winter and my hair froze on my walk home.
The pain had been located exclusively in my knees for most of the fall, but by winter it had crept into my elbows, too, that same tenderness, those Cylon pulses of light.
“So, now my elbows have started hurting too.”
“Maybe you have arthritis?”
“But I’m 19 years old! How could I have arthritis?”
He shrugged. It was his signature move.
At some point I gave up tagging along to frat parties with my sorority friends. Why couldn’t we just skip ahead to the part of the night where we go to Panchero’s and get quesadillas, I wanted to know. I started hanging out with this guy Logan, a big heartthrob at Michigan who Katie and ten other girls had crushes on. Emily and I were the only ones uninterested in boyfriending him, which’s maybe why he liked hanging out with us. We’d talk and joke in my room for hours, listening to Barenaked Ladies and Aerosmith. He’d complain about hook-ups who wouldn’t “put out” and so one night, I did. Sex wasn’t a big deal for me, honestly, and I didn’t think much of the fact that I’d be the only girl he’d had sex with besides his high school girlfriend. It seemed fun, I guess.
The actual intercourse lasted approximately thirty seconds. We hooked up again the next night and then he stopped talking to me. Stopped saying hi to me, even. I wrote him a long letter and marched down to his dorm room to deliver it, intro’ing our talk with, “So are you just gonna ignore me forever?” I wanted to assure him I wasn’t interested in him as a romantic partner, just as a hook-up buddy, although honestly my main interest was that people might think I was cooler if they’d heard we’d hooked up. (That part of the plan worked swimmingly, for what it’s worth.)
He avoided eye contact, and then managed, “it was meaningless and that’s not right, you know?”
“But I thought that’s what you wanted?”
It seemed like nothing I knew how to do with my body was the right thing to do anymore, even if it was something I’d been asked to do, even if it was the only thing I’d been told everybody wanted women to do in the first place.
It’s alienating to live with an undiagnosed illness. You’ve got no clue how you’ll feel the next day, or what to do about it if you do. The future is fuzzy, the present is unclear. You’re waiting to find out what’s wrong, but don’t know who’s gonna end up telling you, or when. Emily wanted to make plans for living in New York City the next summer, but I stared at internship listings in the Career Center and wondered if I could do any of them lying down.
I’ve had major bouts of depression throughout my life for various reasons, but that first year at Michigan was the saddest and loneliest I’d ever been for no reason at all. At 19, everything seems potentially permanent and therefore terrifying — you’re between childhood and adulthood and clues shoot from all directions about what that adulthood might look like. Mine was foggy as day: I’d get straight As, be single forever, and my body would never work again.
After finals, I stopped exercising altogether. Surely exercise was the reason I’d gotten hurt in the first place, so I’d just stop exercising and wait on my ass for shit to get better.
Shit did not get better.
I took my three ibuprofen every three hours.
I sat very still.
Shit did not get better.
Shit got way fucking worse.
On Christmas Day I hobbled out into the living room when I heard my grandmother up making coffee. She and my grandfather lived in a tiny house on State Route 72 in Southwest Ohio, just outside of Wilmington. My Dad grew up there, in a big white farmhouse they’d sold when I was a kid for a more manageable place. Grandpa had quit farming and became a truck driver, but when my Dad died, Grandpa retired. Everything changed after that for them. For example, my grandmother was eventually diagnosed with fibromyalgia. She’d been in constant pain pretty much ever since. “I’m just like the Tin Man, honey,” she’d joke. “Your old grandma’s just creaking around.”
I could smell the coffee. “Well honey, you’re sure up early,” she declared, hand on hip.
I must have looked so young and old then, all at once, so scared and also so slow. “I… think… I might be sick?” I told her where I hurt and she asked, “Well sweetie, maybe you have what I’ve got?”
When you’re 19 and your 69-year-old grandmother suggests you’ve got what she’s got, you know you’re in trouble. But she had books and papers and a whole binder of information and she pulled them out for me and I read them and looked at the pictures, especially the picture of a human body with little red dots where the pain was.
She explained that fibromyalgia was caused by physical or mental trauma, like a car accident or somebody dying. For some reason that was the hardest part to swallow — could this have come from the same place for both of us? Because when it happened, I stayed strong, you know? I handled it. I didn’t take medication or start therapy or talk about my feelings. My Dad’s death had destroyed everything around me except me. What if it had just been saving me for last?
This day, Christmas, is especially foggy in retrospect. I know it was decided, somehow, with my grandmother and my Mom and everybody, that my brother and I should go back to Michigan that day and not stay out the week, because I needed to see a doctor. Did I drive home? If so, how? I don’t remember getting home, or sleeping, if I slept, or waking, if I woke.
According to my diary, I had a blood test for arthritis on December 27th, and then saw a rheumatologist on January 6th. I knew the rheumatologist, I used to babysit for her daughters back when we lived across the street from them, before my parents got divorced. I remember being so shocked by the number on the screen when they weighed me that I audibly gasped. The rheumatologist touched all these spots on my body and asked me how they felt. I was tender in so many places, it turned out, but hadn’t known it, because it had been so long since I’d been touched.
I felt like suggesting fibro would be leading the witness, so I didn’t, but she reached the conclusion on her own.
She prescribed a small dosage of Elavil, an anti-anxiety medication, to take before bed, and Celebrex, a painkiller usually given to seniors with arthritis. I had my words. I had a name for how I hurt, and I had the appropriate pills.
I never know how to describe Fibromyalgia, so I usually use a lot of non-specific words in a row, like “pain joint fatigue disorder syndromey thing.” But that’s only one of many problems I have communicating with others about the situation. The word itself, for example, is one or two letter swaps away from sounding like something involving vaginal discomfort and I’ve only recently cemented my ability to spell it properly. The word has an actual origin, however: fibro- is derived from the new Latin meaning “fibrous tissues” and myo- and algos- are Greek for “muscle” and “pain,” respectively. But there’s also something about it that sounds imaginary, like medical researchers scooped every errant symptom from their proverbial junk drawer and tossed it into a syndrome processor and out came this stew of sickness they named “fibromyalgia.” My mother, who took more interest in learning about fibro than I ever did, came home from a presentation on the topic convinced that just about every weird thing that had ever been wrong with me, from eczema to generalized anxiety disorder to hyperhidrosis, could be explained by fibromyalgia.
Indeed, many humans don’t think fibro is “real.” They think it’s another crackpot invention from Big Medicine and Big Pharma, and usually these people know somebody — an annoying aunt, Dolores from the office, their ex-girlfriend’s perpetually cranky ex-rooommate — who claims to have fibro but, in these people’s expert opinion, are really just whiners. Even some doctors are “skeptical” about fibromyalgia due to the absence of objective diagnostic tests for it.
Wikipedia describes FMS, commonly considered either a musculoskeletal disease or neuropsychiatric condition, as “a medical disorder characterized by chronic widespread pain and allodynia, a heightened and painful response to pressure.” Others cited symptoms of fibromyalgia syndrome include debilitating fatigue, sleep disturbance, and joint stiffness. It’s noted that fibromyalgia is frequently “comorbid” with depression, anxiety, and PTSD. Most important to a diagnosis is, however, the 18 Pressure Points outlined by the American College or Rheumatology’s criteria — specific tender points on our bodies that are painful to touch and, in my experience, start throbbing whenever you haven’t been managing your situation properly. There is no “underlying common cause” of fibromyalgia and there is no cure.
Now it was on me, now it was also mine.
I went back to the dorms and crept into Emily’s room and sat on her bed. “They gave me medication.”
“Oh my God, how do you feel?” Emily said with an urgency that surprised me, because she’d been napping when I walked in. She knew that I had a lot of pretentious holier-than-thou feelings about psychiatric medication. But who was I? My body had just fucking turned on me! I thought I knew what it was like to have a body and suddenly I was somebody remembering that feeling, screaming inside a carcass. Clearly I didn’t know anything about what should or shouldn’t go inside me. But also: my body had betrayed me. How could I betray it in return.
“I don’t know,” I said. Then: “Tired.”
I seem to have a habit of this — being against a thing because that’s the only way to stop myself from wanting it so much. Like being gay, eventually. Like needing anti-depressants, a few years after the day I am telling you about right now.
Fuck, I couldn’t wait to take my goddamn Elavil. That sounded awesome. I was so tired.
Second semester I took 18 credits, but left my morning blocks open and loaded up on evening classes so I could attend physical therapy three times a week at HealthSouth, which was in a strip mall one town over. I’d found it in the phone book.
“Usually women with knee problems like yours have hips like this,” the physical therapist told me, extending his hands far beyond his own narrow hips. “But you don’t! So this shouldn’t be too hard!” I frowned.
He focused on strengthening my quads, mostly, and I just enjoyed being able to exercise at all. I didn’t even mind doing the Stairmaster backwards while playing catch with a medicine ball. Plus every session ended with the electrodes I’d been so jealous of at MedSport.
See, the best way to combat fibro is to remain active. 20 or so minutes of standing still lights up the pain in my knees. Driving long distances makes my entire body throb. When I’m unable to get to the gym for a few days, the pain starts creeping up on me. I have to be active, I have to exercise, because if I don’t, I’ll get sick again. This also means that the physical therapist who’d advised me to stop exercising had contributed to, not abated, my rapidly progressing chronic pain disorder.
Whether or not Elavil was a placebo, it worked. I was able to fall asleep within an hour of laying down, usually, a big improvement over the four to five hours I’d gotten accustomed to throughout my life.
Not everything adds up, though. Like over time it’s been my wrists, actually, that hurt the most, and there aren’t wrists on the fibro pain charts. That’s just my body, I guess, and what it does, and maybe I’ll never know why.
Things got better. They did. I made more friends. Emily and I found a darkroom on the fourth floor and took it over for our own work. I stopped writing down everything I ate. As soon as I started dealing with the fibro and stopped thinking so much about what I was eating, my body returned to the place it had been before the fibro started, a mystifying element of this process I’ve yet to define.
The rheumatologist I’d seen retired a few weeks after I saw her, and the cost of getting a new rheumatologist was daunting, to say the least, so I dug around online and found MedsMex.com, where I could order the Celebrex dirt cheap. Emily and I moved into the NYU dorms for the summer — she had an internship because her Dad knew people. Nobody in my family “knew people,” so I couldn’t get an internship. Instead I worked at The Olive Garden, where I discovered after a few happy hours with the boys that Celebrex and alcohol are a mean combination, so I stopped taking the Celebrex. But the pain didn’t come back, I was okay. Now I manage it, now it is a thing to manage.
It’s been 13 years now since I was diagnosed, 13 years of living with a chronic pain disorder. 13 years of a stressful week at work being compounded by searing pain in my wrists and elbows, 13 years of crying throughout the last leg of a road trip due to the immense pain inspired by sitting still for so long. 13 years of designing my work and social life around needing enough sleep and time to work out. 13 years of feeling like I am burdening my partners with my special needs, despite their insistences to the contrary. 13 years of every unrelated pain earning fibro’s automatic double word score and knocking me out. 13 years of wishing all difficult things could be done lying down.
I’ve changed how I manage fibro and Chronic Fatigue Syndrome over the years — different pills, different exercises, different “home remedies.” I’ve been tinkering with a cocktail that hits all my bases, enabling me to sleep but also to be alert and awake, easing my pain without knocking me out. I moved to California three years ago, and marijuana is legal here, and that helps with pain management. Compared to the stories I hear of other people with fibro, I think I’ve fared about as well as anybody possibly could.
But yes, it’s also become another one of those things that not everybody wants to take seriously, one of those things about me that the world demands I assemble a narrative to explain. But working backwards like that doesn’t seem fair. I didn’t crush on girls in middle school, so I’m not queer enough. I always excelled academically, so I must not really have ADD. I’ve never been hospitalized for a suicide attempt, so I must not really have Major Depressive Disorder. What I know is this: these words gave me the tools to get better and be happier and live a more authentic life. Maybe not all of those words are the right words for what I am, but they’re close enough.
But this, above all, is what I’ve learned: The body is not meant to be known. We can try, we can try science, medicine and doctors. We can take pills and plot our pain on a diagram and count our calories and give our blood to experts for analysis. But ultimately nobody — no doctor, no book, no diagnosis — can trump our own experiences of our own bodies, of our own tender spots and our own trails of light, of what we do to feel better and what we avoid to avoid feeling worse. This is me, this is my body, and it hurts to live inside it most of the time, but it’s all I have. It’s all I’ll ever need.