“Are you ok?”
“I’m good, just a little pain.”
“Did something happen?”
“Oh no, just the usual connective-tissue thing joint pain messed-up-ness.”Quizzical eyes. Or pitying eyes. Or glazed-over eyes. Or eyes reassessing my physical and mental fortitude.
✿
I have chronic pain. I didn’t rebel much 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 fifteen years with pain, holding pain, making room for it in my body, cherishing it, almost. Never noticing its absence – pain is like that – and always noticing its return. One year ago, I was diagnosed with hypermobility and sent on a journey of recovery. After fourteen years of struggling without a name for my pain, wrestling with my body and with my doubt, it has been a revelation to explore what it means to be validated in this very solitary experience. 
Medical diagnoses are labels you can rarely reclaim for yourself. Societal norms and insurance regulations have created an infrastructure in which medical diagnoses are black and white: 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. A lack of a diagnosis by a professional leads to assumptions that a medical condition isn’t real, it’s psychosomatic, it’s hysteria.
Receiving a diagnosis is the key to 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 the same language of medical labels and share the same reliance upon diagnoses.
A diagnosis is a privilege because not everyone can access appropriate diagnoses. Barriers 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 issues; 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, abelism.
✿
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. 
“Oh, does that hurt?”
“Yes.”
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 thus the inklings of a potential diagnosis were scraped together from my various and disparate symptoms: mild potential connective tissue disorder, possibly Marfan’s Syndrome. Recommendation: pain killer for joint pain, yearly echocardiograms for heart.
I was young, I’m female, and my pain would ebb and grow and pierce and disappear without seeming reason. I lacked the authority of age, I lacked the medical vocabulary, and I lacked the concrete symptoms necessary for a typical diagnosis. Pressure is painful to my joints, but also along my ribcage and on my shoulders. Inactivity causes pain in my hips but excessive activity can aggravate my lower back.
Frustrated doctors listened to my words, looked at and inside my body, took the pieces of information they learned, and stuck together a story that fit. I was in pain, so I need pain killers. My aorta was larger than normal, so I should monitor my heart. I was young, so perhaps I was exaggerating. I was female, so perhaps I was exaggerating. I couldn’t articulate when or where or why it hurt, so perhaps I was exaggerating.
The doctors were not alone in their assumptions. My first year with physical pain was also emotionally painful. I found it impossible to fully explain what I was feeling. My father, hoping to ease my discomfort, would massage my shoulders painfully. I would ask him to stop and 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. My pain at seemingly normal physical interactions – lightly bumping my knee or hip, wrestling with my brother – was met by my family with light mockery, that infamous builder of character.
Chronic pain becomes a solitary experience. My world would color at the edges with pain and yet I knew that no one’s world was tinged the same color. I found myself using my face to share my pain. Twisting the edge of my mouth. Gritting my teeth. Closing my eyes. Hoping someone would notice. Praying that no one would notice.
Pain also leads to mistrust. Mistrust of touch, touch that could be painful. I would end up apologizing for feeling pain at someone’s well-meaning touch, until it was just easier to avoid most physical contact. My flinches at unwanted contact said far more than I wanted them to and were far more effective than I dreamed. People don’t touch a flincher more than once.
I have health insurance now, another privilege. And a primary care physician who listened to my medical history and offered me pain killers. I said no. She then recommended that I go to the Marfan’s clinic at Johns Hopkins University to test my long ago far away diagnosis. I said yes, and I went, and I do not have Marfan’s Syndrome. Nor do I have any connective tissue disorder. I was oddly complacent. Fifteen years of internalized doubt, flinching, and mistrust of myself and others had prepared me for this moment: there is nothing wrong me and it’s all in my head. Those doctors were all correct. Back to my primary care physician.
✿
I was young, I’m female, and my pain would ebb and grow and pierce and disappear without seeming reason. I lacked the authority of age, I lacked the medical vocabulary, and I lacked the concrete symptoms necessary for a typical diagnosis. Pressure is painful to my joints, but also along my ribcage and on my shoulders. Inactivity causes pain in my hips but excessive activity can aggravate my lower back.
Frustrated doctors listened to my words, looked at and inside my body, took the pieces of information they learned, and stuck together a story that fit. I was in pain, so I need pain killers. My aorta was larger than normal, so I should monitor my heart. I was young, so perhaps I was exaggerating. I was female, so perhaps I was exaggerating. I couldn’t articulate when or where or why it hurt, so perhaps I was exaggerating.
✿
The doctors were not alone in their assumptions. My first year with physical pain was also emotionally painful. I found it impossible to fully explain what I was feeling. My father, hoping to ease my discomfort, would massage my shoulders painfully. I would ask him to stop and 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. My pain at seemingly normal physical interactions – lightly bumping my knee or hip, wrestling with my brother – was met by my family with light mockery, that infamous builder of character.
Chronic pain becomes a solitary experience. My world would color at the edges with pain and yet I knew that no one’s world was tinged the same color. I found myself using my face to share my pain. Twisting the edge of my mouth. Gritting my teeth. Closing my eyes. Hoping someone would notice. Praying that no one would notice.
Pain also leads to mistrust. Mistrust of touch, touch that could be painful. I would end up apologizing for feeling pain at someone’s well-meaning touch, until it was just easier to avoid most physical contact. My flinches at unwanted contact said far more than I wanted them to and were far more effective than I dreamed. People don’t touch a flincher more than once.
✿
I have health insurance now, another privilege. And a primary care physician who listened to my medical history and offered me pain killers. I said no. She then recommended that I go to the Marfan’s clinic at Johns Hopkins University to test my long ago far away diagnosis. I said yes, and I went, and I do not have Marfan’s Syndrome. Nor do I have any connective tissue disorder. I was oddly complacent. Fifteen years of internalized doubt, flinching, and mistrust of myself and others had prepared me for this moment: there is nothing wrong me and it’s all in my head. Those doctors were all correct. Back to my primary care physician.
“I can prescribe you a pain killer.”
“No.”
“You probably have fibromyalgia.”
“I don’t think I have fibromyalgia.”
“Well, then you should see a rheumatologist.”
Sometimes, if I sit in one position for a long time, particularly if my legs are tucked under me, I struggle to unbend myself as I get up. My knees and hips won’t cooperate; it’s as if my joints are made of stiff but flexible plastic; they need to warm up before they can be manipulated.
I was afraid that taking medication for my pain would further blur the edges between what I knew I was experiencing and what my interactions with other people told me I was experiencing. I was terrified I would lose what little certainty I had – that my sharpness, physical and mental, would be rubbed away into muzzy nothingness.
As I aged, I became better at saying the words that people expected to hear. No one wants to hear “just the usual connective-tissue thing joint pain messed-up-ness.” “Old bones,” said with a wry smile, will comfort the worried. “Oh, just stiff,” said with an exaggerated wince, soothes the idly concerned.
I also 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. I was forced to find the words for what I was feeling at the exact moment – both to help him find a solution to the pain, like sitting for a moment or icing a hip, and to help me listen more closely to my body. And by listening to my body and articulating precisely what I was feeling, I knew that the increasing pain in my hips meant that something had to happen, some final solution had to be found.
My rheumatologist is a small thin woman with very cold hands. She 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 succeeded better than I ever have. She took off my shoes, looked at my feet. 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. All 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 all better, 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 they believed it. She believed it and knew how to start making it better.
It’s been eight months 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. I have become infinitely better at listening to my own body. I have become stronger. I have changed my life: only closed-toe shoes now, with arch support inserts. No standing still for hours at a party. No popping one hip out when I stand. No crossing my legs at the knee now, only at the ankle, demurely, or ankle over knee, brazenly.
With a diagnosis, I feel more confident to assert my pain. I can let myself admit weakness. I can’t walk 5 miles anymore. I sometimes need to stand up during a meeting. I have a lumbar bolster on my chair at work. Before my diagnosis, I was afraid that I would have to explain myself in my own words, my own inadequate labels. 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 in front of me, still filled with pain. But maybe not so alone. 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 was wallowing in pity.
There is no life lesson here, I don’t think. But there are community lessons. There are lessons that I fail consistently to learn: Believe others when they articulate a problem. Use their words, not your own. Validate others’ lived experience.
✿
Sometimes, if I sit in one position for a long time, particularly if my legs are tucked under me, I struggle to unbend myself as I get up. My knees and hips won’t cooperate; it’s as if my joints are made of stiff but flexible plastic; they need to warm up before they can be manipulated.
✿
I was afraid that taking medication for my pain would further blur the edges between what I knew I was experiencing and what my interactions with other people told me I was experiencing. I was terrified I would lose what little certainty I had – that my sharpness, physical and mental, would be rubbed away into muzzy nothingness.
✿
As I aged, I became better at saying the words that people expected to hear. No one wants to hear “just the usual connective-tissue thing joint pain messed-up-ness.” “Old bones,” said with a wry smile, will comfort the worried. “Oh, just stiff,” said with an exaggerated wince, soothes the idly concerned.
I also 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. I was forced to find the words for what I was feeling at the exact moment – both to help him find a solution to the pain, like sitting for a moment or icing a hip, and to help me listen more closely to my body. And by listening to my body and articulating precisely what I was feeling, I knew that the increasing pain in my hips meant that something had to happen, some final solution had to be found.
✿
My rheumatologist is a small thin woman with very cold hands. She 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 succeeded better than I ever have. She took off my shoes, looked at my feet. 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. All 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 all better, 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 they believed it. She believed it and knew how to start making it better.
✿
It’s been eight months 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. I have become infinitely better at listening to my own body. I have become stronger. I have changed my life: only closed-toe shoes now, with arch support inserts. No standing still for hours at a party. No popping one hip out when I stand. No crossing my legs at the knee now, only at the ankle, demurely, or ankle over knee, brazenly.
With a diagnosis, I feel more confident to assert my pain. I can let myself admit weakness. I can’t walk 5 miles anymore. I sometimes need to stand up during a meeting. I have a lumbar bolster on my chair at work. Before my diagnosis, I was afraid that I would have to explain myself in my own words, my own inadequate labels. 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 in front of me, still filled with pain. But maybe not so alone. 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 was wallowing in pity.
There is no life lesson here, I don’t think. But there are community lessons. There are lessons that I fail consistently to learn: Believe others when they articulate a problem. Use their words, not your own. Validate others’ lived experience.
0 comments:
Post a Comment