How I Kept Living When My Body Turned On Me

I was diagnosed with rheumatoid arthritis when I was 24. Now every day is a battle with myself.

I received the diagnosis in a letter, hidden in a long, dry paragraph detailing the results of countless blood tests. “From the above labs, your exam and history," my doctor wrote, "I would diagnosis [sic] you with rheumatoid arthritis…” It was so casual, so unremarkable, that I almost missed it. My first response was to laugh. Doesn’t something of this nature warrant a phone call? At least some bold print?

That night, I told my boyfriend my diagnosis. He heard only the word “arthritis,” and was reminded of his grandma’s complaints about feeling the oncoming rain in her knees. He allowed me to curl up in his lap and cry on the cartoonish tattoo of waves on his shoulder, but didn’t have much patience for sadness. After comforting me for a few moments, he said, “OK, OK, it’s not like you’re not dying. Still want to go grab that beer?”

I couldn’t really blame him for his ambivalence — the terminology is confusing, and I barely understood it myself. I had difficulty explaining to him that my disease wasn’t a disease of old age. I had trouble getting him to understand what it meant that my immune system had begun attacking my joints. “Just google it,” I told him when I realized I wasn’t getting through. But I envied his nonchalance. There was nothing I wanted more than to go to the bar and drink a beer and not worry about the words chronic and incurable.

On my first post-diagnosis visit to the rheumatologist, the doctor breezed into the room, launching into a list of possible treatments and their unpleasant side effects: mouth sores, hair loss, lymphoma. She gave little explanation of the disease itself, how it worked or why it had surfaced now. I asked her the question I’d been dwelling on ever since I opened the letter: What does this mean for my life?

“You can still have children,” she said, as though that was what I had asked. “Often times, the disease goes into remission during pregnancy, though many experience a flare of their disease after giving birth. But it’s still entirely possible to have a family.”

“Oh,” I said, too timid to mention that reproducing was the last thing on my mind. I was 24. I wanted to know what this meant for today, and tomorrow, and next year.

I left clutching a splashy pamphlet produced by a pharmaceutical company. The people in it were young and vibrant. They did ballet and played fetch with their chocolate Lab. It didn’t look so bad. In fact it looked a lot better than my current situation, which was mostly consumed by the partying boyfriend whose constant pursuit of fun had me struggling to keep up. If things played out like the doctor thought they would, getting on the right medication meant that my life would go on much as it had, except with less pain (and hair) and, apparently, more games with adorable canines.

The pain had begun a year before. After graduating from college in St. Paul, I joined the Minnesota Conservation Corps, even though the job description did its best to deter me. It warned: “SEVERE EXPOSURE — Long days, extended hours with spike camping or travel. Work up to 12 days in a row … Working conditions include: heat and humidity, cold/hyperthermia, UV exposure, burning materials, airborne particulates, poor visibility, weather conditions (cold/hot/wet/dry/humid/snow/rain), hunger, irregular meals, nutrition, dehydration, close quarters, highly aerobic, bodily fluids.”

At the time, that list sounded better than slouching at a desk in a climate-controlled office. It spelled adventure. It meant testing my limits.

I moved to northern Minnesota and learned how to chainsaw, protect white pines from deer browse, and spray invasive plants with blue chemicals. One week, my crew constructed stairs on the hiking trail down to Lake Superior at Tettegouche State Park. With the blue of the lake at our backs, we took turns swinging a sledgehammer, pounding three-foot lengths of rebar through layers of wood to secure the stairs in the hill. With each massive swing, the rebar seemed to move only a centimeter, the contact reverberating through my bones. To lift it over my head took every muscle in my body. And yet I did it, over and over again, all day for three days, making the damn rebar move and move and move.

A few mornings later, my pinkies clicked when I opened and closed my hands. Just a little give in the joint, a tiny spark of pain. Over the next few weeks, the rest of my fingers followed suit. Opening and closing my hands became painful and at times impossible. A doctor told me I had “bilateral hand tendonitis” and prescribed ibuprofen and hand therapy, which did nothing to improve my symptoms.

Around the same time, a planet of pain grew between my second and third toe on both feet. I called it “Bootfoot” because it appeared to be caused by my ill-fitting work boots, and because it was easier to deal with the worsening issue by calling it something stupid. I tried wearing different shoes, tried walking less, but the pain seemed to flare and fluctuate independently of how I treated my feet, and I couldn’t ignore it any longer.

After being bounced around from general practitioner to orthopedics to hand therapy to rheumatology, I finally got an answer. It took 20 vials of blood and X-rays of my hands and feet to diagnose me with rheumatoid arthritis (RA). With autoimmune diseases like rheumatoid, the immune system mistakes the body’s healthy tissues for intruders. My body had turned on itself and nothing could turn it off.

At first, my tendency was to avoid thinking about my diagnosis at all, and the beer-swilling boyfriend served as a perfect distraction. I excused my overlong relationship with him by telling myself, and anyone who would listen, that being with him was like being on vacation. He took me to hip bars uptown and always ordered dessert after the starchy dinners he bought me. I drank colorful liquored concoctions with a group of tattooed partiers more than 10 years older than me and with whom I had virtually nothing to talk about. I got in cars with drunk drivers and spent the summer of 2012, one of the hottest in memory, safely encased in a whiskey-amber haze. The demanding drama of my relationship allowed no room for reflecting on the state of my body, beyond the effect of drinking too much cheap beer on a Sunday night.

Though his shrugging attitude toward my rheumatoid was at first a relief, as I slowly learned more about the implications of this disease on my everyday life, I couldn’t justify staying on vacation any longer. When I broke up with him a month after the doctor’s letter arrived in the mail, I faced a lifelong degenerative illness with no buffer. The illusion that I had the power to control the outcome of my life had been siphoned away from me. I had always taken for granted that I had years and years of physical capability in my future. My body, once a vector for pleasure and activity and dissatisfaction, was now also a vessel for doubt and dysfunction and pain.

As I settled into this new perspective of my body, I wondered what might have caused my disease in the first place. Autoimmunity is known to be influenced by genetics and jumpstarted by an environmental trigger, which could include infection, smoking, obesity, emotional/physical stress, or leaky gut. Yet I could find no obvious connections to these potential causes. My parents, who are very healthy, were just as surprised at my diagnosis as I was. As far as we knew, autoimmunity was not part of our family medical history. My doctors didn’t spend much time trying to figure out the why of my illness, but I wanted something to blame. And since my doctors couldn’t tell me, I did my own digging.

Autoimmune diseases affect women more than men. Women make up 70–80% of people with rheumatoid arthritis. Beyond the genetic and hormonal components of this gender bias, I discovered a few resources that ventured that the typical roles and acceptable traits of women, perpetuated by self or society, might play a part in their susceptibility to autoimmunity. I wondered if my tendency to criticize my body and to stuff my “unfeminine” emotions like anger and frustration deep into the caverns of myself made me more likely to become ill.

I learned that personality also might play a role in susceptibility to disease. People who exhibit a lesser-known personality type — type C — have a tendency to appease others and suppress their own feelings, and could be at greater risk for becoming sick. I recognized enough of myself in this description to self-diagnose as an emotion-stuffing, type-C woman, apparently the perfect storm for coming down with an autoimmune disease.

There was something else too. Sometimes I would wake in the middle of the night with my shoulders on fire and wonder, Did I do something to deserve this? Though I would never blame someone else for their illness, I did not give myself the same kindness. I was in pain: I wanted it to have a purpose.

I am privileged in that my disease in its current form comes without loaded cultural connotations, without shame. It is, unless you look closely, invisible. I can say its name aloud in public and not have anyone shrink away in fear or disgust. Perhaps it will one day rob me of my able-bodied privilege, and maybe it is misunderstood as the creaky disease of age, but for now the ascribed meaning, the useless metaphors, the judgment, come only from me.

As I learn to live with this disease, I peer at it through different lenses and metaphors. Is rheumatoid arthritis an enemy to conquer? A companion I will walk with for the rest of my life? Is my disease human or animal, male or female? Does it have, or should it be given, a name? In a way this disease is the love of my life — something I will wake with every day and take with me wherever I go. It will cozy up to my bones, make my mouth go dry, and cause my heart to calcify.

This tendency to imagine my disease as something it ultimately is not has allowed me to distill rheumatoid into something I can face. I am still shy around this disease. I can’t look it square in the eye for what it is. I give it other names and identities because the truth of it is too bulky and sharp to chew up and swallow. Until I develop some sort of bravery to do so — and I hope that with time I will — I continue to shield myself from the full force of what rheumatoid arthritis is.

Not every diagnosis allows time for pondering metaphors, but rheumatoid is no sprint toward death. It is a slow burn, like a peat fire smoldering under the snow all winter. Does that make it sound glamorous? Let me try again.

It is having trouble opening doors first thing in the morning because the grip/twist feels like an electric shock and my fingers move like they’re in encased in clay. It is juggling prescriptions and vitamins and special diets. It is still not having the medication right almost three years after diagnosis, still having swelling in the knuckles and sore knees on wet winter days, the threat of permanent damage to my joints shadowing every quiet moment.

It is crushing fatigue, the kind that makes folding a shirt feel like I’ve just run a marathon, or walking 10 steps to the bathroom a call for an hour nap. It is the embarrassment of repeated sick days, the fear of being seen as unreliable. Trying to explain the fatigue to my friends and co-workers, and worrying that they’re thinking, Well, I’m tired too. It is knowing that anything beyond office work is no longer an option. My days of chainsawing and trail building are over. Perhaps I never intended to be a woodswoman forever, but now that the choice is off the table, I long for it.

It is the right index finger not being able to curl any more. It is the inability to bend my right wrist back, making my waving and high-fiving humorously inept. It is hopping around the kitchen in pain as I attempt to open a jar, the disheartening defeat and burning wrists when I set it back in the cupboard, still sealed. It is the promise of a future of wheelchairs, surgery, disability checks, and joint replacements. It is paranoia of side effects from medication — is my skin more orange than usual? Are my lymph nodes swollen? Is my hair getting thin? These new neuroses replace the old ones of too-thick thighs and too-thin eyebrows.

It is learning how to survive sentences like “People with rheumatoid arthritis are at a greater risk of dying from any cause,” and “About 50% of rheumatoid arthritis patients have to stop working within 10 years of diagnosis.”

It is not knowing what’s coming next: going to bed thinking things seem to be getting better and waking up unable to walk. It is being forced to acknowledge the privilege of knees that bend with fluidity and strong fists that can grip pens and tools and the hands of other people. It is noticing others with visible disabilities acutely, being able to see a very possible future where I might be them.

It is hoping my date doesn’t notice the odd lump on the back of my wrist or the thickness of my fingers, wondering when is the right time to tell a new man about my condition. It is boyfriends asking that I don’t call it a “disease” and refer to it as a “condition” instead. It is wondering how scared they will be, when it will become too much for them, when they will open the door with their fluid fingers and leave for good. It is staying behind when everyone else is going dancing. It is never being able to wear rings.