This article was first published on March 29, 2019 on Medium.com.
Chronic Illness Truths (working title), to be published in 2019, is a collection of true stories about life with chronic illness. These amazing authors share their stories to comfort, inspire, educate, acknowledge, celebrate, and mourn. Through their experiences they help others with chronic illnesses to feel less alone and family and friends to understand what it is we experience. For more information, a chance to read an advance copy, and to be the first to learn the upcoming publication date, simply sign up for notifications at chronicillnesstruths.com.
A neutral scene: I walk with a friend, perhaps from class to class in college, across the spring-soft grass of the quad. My left hip aches and I slip into a limp, flinching from the hurt. My jaw is tight, clenched in pain and in anticipation of the inevitable.
“Are you ok?”
“I’m good, just a little twinge.”
“Did something happen?”
“Oh no, just the usual connective-tissue thing joint pain messed-up-ness.”
As the words leave my mouth, I cringe from their inadequacy. I cringe from my uncooperative hip and my uncooperative mouth. I cringe from my physical self, peeling away from the inside of my skin and muscles and joints, leaving my legs and arms fumbling as I huddle deep inside. Safe. Sure.
I have chronic pain. I didn’t rebel in high school, but my body did. As we — my body and I — grew into our fuller selves, lengthening, strengthening, curving, and straightening, my joints began to ache. My shoulders and hips. My knees and my lower back. My wrists and elbows.
I have lived two decades with pain, holding pain, making room for it in my body, cherishing it. Never noticing its absence — pain is like that — and always noticing its return.
A diagnosis is, like any label, a privilege granted by the labeler. Labels carry power and control. The difference between medical diagnoses and other labels is that one cannot officially diagnose oneself. For example, I can label my sexuality — and that gives me privilege. I can name myself “bisexual” and most people will understand what I mean by that, even if I can’t precisely articulate the various intricacies of my personal sexuality. The label is the shorthand.
Medical diagnoses, on the other hand, are labels you can rarely claim for yourself. Social norms and insurance regulations have created a structure in which medical diagnoses are on/off switches: you have or you have not. Our reliance on diagnoses makes it difficult for people without a diagnosis to legitimize their medical experiences — to get appropriate care, for example. The lack of a diagnosis by a medical professional can lead to the assumption that a medical condition isn’t real, that it’s psychosomatic or hysteria.
Receiving a diagnosis creates legitimacy. A diagnosis is the key to accessing appropriate and necessary care. A diagnosis is the key to gaining the understanding of one’s peers, all of whom speak that same language of medical labels and share the same reliance on diagnoses.
A diagnosis is a privilege because not everyone can access appropriate diagnoses. Barriers to diagnoses and care are myriad: financial ability to access an appropriate professional; geographic proximity; ability to articulate one’s symptoms, whether because of a language barrier or because of the nature of the medical issue; trust that you will be shown the courtesy and respect you deserve; knowledge that you can access a diagnosis and thus appropriate care; sexism; racism; homophobia; transphobia; ableism.
When my pain first surfaced, my mother was one of the few who believed me. She took me to pediatric orthopedists and hematologists across New England. At the orthopedist, I lay on the table in a thin hospital robe as the doctor squeezed my knees until I winced with pain. I retreated into myself.
“Does that hurt?”
I didn’t wipe away the tears. I was relieved: people don’t cry if they’re not really in pain, right? So I’m not faking it, right?
The doctor was chatty. I answered his questions about high school with forced good humor. My mother was silent, leaning forward over her knees, watching me. Her face was tense.
The bone scan showed nothing. The thyroid scan showed nothing. The blood tests showed nothing. The echocardiogram showed my aorta at the wide end of normal and from there the crumbs of a meager diagnosis were scraped together from my various and disparate symptoms: mild potential connective tissue disorder, possibly Marfan’s Syndrome.
Recommendation: naproxen for joint pain, yearly echocardiograms for heart. Monitor condition.
I was young, I’m female, and my pain would ebb and grow and pierce and disappear. I lacked the authority of age, I lacked the medical vocabulary, and I lacked the concrete symptoms necessary for a hard diagnosis. Pressure is painful to my joints, but also along my ribcage and on my shoulders. Inactivity cramps my hips but excessive activity can aggravate my lower back.
Frustrated doctors listened to my inadequate words, looked at and inside my body, took the pieces of information they learned, and sewed together a story that seemed to fit, albeit clumsily. I couldn’t articulate exactly when or where or why it hurt, so perhaps I was exaggerating.
Their doubt fed my doubt. I grew less sure of myself. Maybe I was exaggerating.
The doctors were not alone in their assumptions. My first year with physical soreness was also emotionally achy. I found it impossible to fully explain what I was feeling. My father, hoping to ease my discomfort, would massage my shoulders painfully. When I asked him to stop, I could see his confusion and his own frustration at not being able to help me. He insisted on massaging my shoulders; his one response to his daughter’s pain. I sat through the pain, unwilling to hurt him, even if it meant my own hurt. I thought that perhaps my pain was less than his, or maybe my pain wasn’t real. And so my “no” slid away from meaning “no.”
Chronic pain becomes a solitary experience. My world would color reddish black at the edges, but I knew that no one’s world was tinged the same. I used my face to share my pain. Twisting the edge of my mouth. Gritting my teeth. Closing my eyes. Hoping someone would notice. Praying no one would notice.
I have health insurance now, another privilege. And a primary care physician who listened to my medical history and offered me pain medication. I tried my unreliable “no.” She recommended I go to the Marfan’s clinic at Johns Hopkins University to test my long-ago, far-away, semi-diagnosis. I said “yes,” and I went, and I do not have Marfan’s Syndrome. Nor do I have any connective tissue disorder.
I felt oddly complacent, distant from this news/not-news. Fifteen years of doubting, flinching, and never trusting myself or others had prepared me for this moment: there is nothing wrong with me and it was all in my head. The doctors were correct. My family was correct. The doubt overwhelmed me.
My primary care physician: “I can prescribe you a pain killer.”
“You probably have fibromyalgia.”
“I really don’t want to have fibromyalgia.”
“You should see a rheumatologist.”
I was afraid that taking medication for my pain would further blur the edges between what my body felt — the electric twinges and dull throbs — and what my interactions with other people told me I was experiencing — nothing. I was terrified I would lose what little certainty I had, that my sharpness, physical and mental, would be rubbed away into a muzzy haze.
My pain was the only indication that I had pain. Only looking back can I try to articulate my deepest fear: that if I erased my pain, I would never be able to prove it existed.
I improved at articulating my pain. It was an important process for my partner and I; he would become frustrated at my general aches and pains, my winces and sharp breaths, my inadequate mumblings. I was forced to find the words for what I was feeling at that moment — both to help him find a solution for the pain, like sitting for a moment or icing my hip, and to help me listen more closely to my body.
And by listening to my body and trying to articulating precisely what I was feeling, I knew that the pain in my hips, which had been slowly increasing over two years sending sharp stabs into my lower back, meant that something had to happen, some solution needed to be found.
My rheumatologist is a small thin woman with cold thin hands. I made the appointment at my doctor’s urging. I had prepared for my appointment, sketched the history of my pain, but I felt a foreboding, a sense that this was my last chance. I worried that if she had no answers, I would not go seeking again.
The rheumatologist listened to me, without speaking, until I ran out of things to say. She then asked me questions about when my pain started and when it flared up. I struggled to remember, to articulate. With her prompting, I slowly painted the picture of my pain. She took off my shoes, looked at my feet, pressed her cold fingers to my arches. Stood me up, looked at my knees and my back. She gently bent my hips and asked me to push my arms against her palms.
She sat back.
“You have high arches and hypermobility and your joints have been struggling for fifteen years to hold your body together. Your muscles are tight from cramping around your joints to protect them.
“No more flip flops. Arch support all the time. We’ll get you a physical therapist to work out those tight muscles and you should do some core strength training. You’ll never be better, you’ll never be pain free, but we’ll get you well on your way.”
Sometime later I was on the street, walking towards work. I called my mother. I started crying. Someone believed me. No; someone believed my body. She could hear what my body was saying without me having to translate it into my too-often inadequate language. She could hear what my body was saying and she believed it. She believed it and knew how to start making it better.
It has been eight years since someone listened to my body, told me what it was saying, gave me the language to tell others, and helped me begin to fix myself. My pain has not disappeared — it never will. It has shifted, shrunk, sometimes sharpened. I have become infinitely better at listening to my body. I have become stronger. I have changed my life: only closed-toe shoes now, with arch support inserts. No standing for hours at a party. No popping one hip out when I stand. No crossing my legs at the knee now, only ankle over ankle, demurely, or ankle over knee, brazenly. I lift weights and do Pilates. And after, ibuprofen. Heat. Ice. Daily stretching and strengthening, lying on the living room carpet, coaxing my hips to soften.
With my diagnosis, I feel more confident asserting my pain. I let myself admit weakness. I can’t walk five miles anymore. I sometimes need to stand up after sitting for hours during a meeting. I have a lumbar bolster on my chair at work. Before my diagnosis, I was afraid to explain myself in my own words, my own inadequate labels, those names that no one knew. Now I have my diagnosis to protect me, to privilege me. I also have the responsibility to protect myself by listening to my body and serving its needs. Now that I know what’s wrong, I cannot ignore it.
My life stretches out before me, still filled with pain, but maybe also filling back up with trust. The process of learning to listen to myself has helped me listen to others and helped me speak to others. My partner has been with me on this journey and has protected me when I needed comfort and pushed me when I wallowed in self-pity.
There may be a community lesson here, a lesson I hope to learn: believe others when they speak. Trust when someone articulates a problem. Trust when they can’t articulate it well. Use their words, not your own. Validate others’ lived experience.
Remember your own pain.
Remember your pain.
A neutral scene: I walk with a friend, perhaps to get a sandwich at lunch, across the bumpy cobbles of back-street Boston. My left hip aches and I stop for a moment, clenching into the pain as I was taught. The spasm passes. My friend has stopped a few feet ahead.
“Are you ok?”
“Will be. Let’s walk a little slower.”