Tag Archives: bodies

The Importance of Believing Our Pain

Muscles of the Neck and Trunk illustration via University of Liverpool https://www.flickr.com/photos/liverpoolhls/10818735423/in/photolist-hu1R86-rbDMvv-hu1YVa-6be12x-dyqq6c-dyxqVJ-dywK4L-dyqr6X-dyqoh4-dyqULz-so1j2-65EqM8-a2PQNT-26FYDXA-2415tyS-JCe16m-66SMVJ-5u8nSp-ae8Jrb-qU5VfW-htZdo8-htZXeh-b5ZsH6-bsCpDf-6SxTLU-516KD-9cZUDW-8maaza-bFvEcB-go53fY-7AJ9iS-go6gPj-edQvMt-5vnaM1-bsC2Fm-UmQNxh-fzrk7v-8mdjBy-5EAnqQ-94r6J-7MTKJ5-hfKv7f-hfLCR8-hfKuwC-hfKBAL-pS6A8B-2rJA8P-fzFwMb-hu3Wt3-fzri5P; used under a Creative Commons (CC) license.

“I wish I knew what you wanted me to do for you.”

I can’t stop playing that visit, and many others like it, over and over in my mind.

“I don’t know,” I whispered. “You’re the doctor.”

Days before, I had been held in the emergency room for seven hours after going to a clinic for an IV. My symptoms, which I had been experiencing for almost seven months at that time, had flared up so badly I couldn’t keep anything down. I could barely move or speak. I could tell I was dehydrated, so I went back to a clinic I had been to before in hopes of getting some minimal fluid in my system.

One nurse practitioner decided that day that my collapsing episodes and heart palpitations demanded a hospital visit. Immediately. Not a single doctor had recommended that before.

I agreed, because it seemed like the only way I would get my IV and I was scared.

This appointment with my primary care provider had already been scheduled because the doctor wasn’t willing to refer me to an endocrinologist and I wanted to plead my case. After my hospital visit, he had been instructed to provide me with a two week heart monitor as well.

When I arrived, he didn’t have the heart monitor and he remained uninterested in the referral.

“You’re on Celexa,” he remarked. “And I can see here you went to the hospital for mental health reasons in May of last year. Is that right?”

My stomach turned. I knew what was next.

“Yes, but my symptoms didn’t start until six months after my hospitalization. My medication has helped me quite a bit. I have a good therapist, too.”

He nodded. “Mental illness is a powerful thing. Has anything been making you more stressed lately?”

All I could say was “being this sick,” before I burst into tears.

Then the furrowed brow, sad eyes, and “I wish I knew what you wanted me to do for you.”

*

In June, I learned that I have thyroid cancer.

It started by driving an hour and a half away to do extensive testing at a specialty clinic. Then, showing my primary care doctor that my thyroid antibodies were high. He didn’t believe that merited seeing an endocrinologist, but he agreed to refer me after I was persistent enough to wear him down.

The endocrinologist said all my results were normal, except the antibodies. She gave me an ultrasound for kicks, saw some nodules, and told me I needed a biopsy but that I really shouldn’t worry too much.

Five weeks later, it turned out I had a reason to worry.

When I hung up the phone, I believed for the first time in nine months that I was not a liar.

*

My primary care doctor was not the only person who had brought up my mental health history. Virtually every single one of the doctors I saw had raised anxiety and depression as a potential source of my symptoms: fatigue, weakness, collapsing, an inability to gain weight, nausea and vomiting, dizziness, and widespread pain. Every time my tests came back normal, every time a doctor felt comfortable concluding that whatever I had wasn’t killing me, they would look at me with sad eyes and recommend I try mindfulness, deep breathing, and continuing therapy.

How could I not start to believe them?

I began to get diagnoses from some specialists. First, I was diagnosed with chronic fatigue syndrome (CFS/ME). Then, postural orthostatic tachycardia syndrome (POTS). Neither have a cure, nor a solid treatment. Neither were understood by the majority of doctors I saw. Many hadn’t even heard of them.

I grew more and more hopeless. My mind fell into two thought patterns:

What I am experiencing is not real. I have made it up for attention because I am mentally ill. These doctors see through it and I need to see through it myself. No more cutting myself slack. I need to stop pretending.

This is never going to go away, whatever it is. I need to stop searching for answers because even if something is going on, no doctors seem interested in finding out what that might be.

I had accepted my fate, but I couldn’t stop going back and forth about what the fate was exactly. I had been able to quit self harming after my hospitalization, which I had been doing for eight years, and in my lowest moments of feeling so fully unbelieved it took every ounce of strength I had to refrain from falling back into that coping mechanism.

Instead, every time I ached, vomited, collapsed, I told myself: you deserve this. This is what you get for being so sensitive. This is what you get for letting your mental health take over your body, somehow. Everyone is tired. What makes you so special?

It hurt the people around me to hear me talk about myself this way. Once, marching up the stairs to my apartment, I turned to my partner and told them I had decided I wasn’t sick anymore.

They stared back at me, unsure of what to say.

“This is too much work,” I told them. “It’s not worth it. Whatever this is, I must be making it up. So I’m done. I’m not sick anymore.”

They didn’t buy it, but I let that roll off my shoulders. I was determined to end whatever charade I was performing for myself.

That lasted about 24 hours before I collapsed in my home again. I promptly texted them to let them know my experiment had failed. We were able to laugh about it, but I was at my wit’s end. And we both knew it.

*

It is well-documented that assigned-female-at-birth (AFAB) pain has long been disbelieved and dismissed by medical professionals. Women are routinely given less pain medication. Women wait longer in emergency rooms. Doctors perceive us to be overreacting. This is only the tip of the iceberg. Being 22 years old and having been previously hospitalized for mental health issues only made me more likely to be dismissed by doctors.

I knew all of this, but it was still nearly impossible for me to believe that I had fallen into this trap. I assumed that doctors disbelieving women and citing anxiety had no reason to do so, but for me they had every reason to. I had this history that I could not escape, one that meant that my pain couldn’t be real, because up until then, my pain had lived in my mind. And the pain in my body was making the pain in my mind worse.

I thought that I must be lying, even though I was being suffocated by my condition every day.

I don’t doubt that my many doctors were doing what they thought was best for me. Many of them were kind, and tried to console me as I struggled. But that kindness was almost never paired with a desire to continue searching for the source of my pain. They were willing to put this all on me and my mind and move on, because it was an easier way out.

Right now, the doctors don’t know if removing the cancer will make my symptoms go away. It may, but it may not.

I am confident that no matter what, I will be okay. The support in person and online I have found has been a lifeline. It made me feel more comfortable with the idea of this not only being real, but also being something that cannot be cured.

But I needed to believe it first. As messed up as it is that it took a cancer diagnosis for me to believe that my body was telling me the truth, I’m glad I was able to make it to this place at all. If this is what it takes for me to stop apologizing for every feeling I have, for every inch of space I take up, for every time I make myself heard, then I am grateful for this chance to grow.

I deserve to believe in my own pain, no matter my history. My pain deserves to be treated, no matter my scars. I am worthy of assistance, and I am worthy of trusting myself. We all are.

Pain is our most basic form of communication with ourselves. We spend our lives learning how to talk to our pain, how to care for our pain, and how to express what our pain is saying. To be told over and over again that this fundamental conversation within ourselves is false–that we are not the experts on our pain, despite being the only ones who speak its language–corrodes our sense of self. How can we ever hope to be healed when our society is telling us that we do not hurt in the first place?

Our culture teaches people on the margins from day one that their experiences are not the norm, that their truth is not the Truth. This instilled disbelief has dire consequences, including undiagnosed illnesses, untreated debilitating conditions, and death. It part of is how those in power remain in control of who has the privilege of receiving care.

Resisting the untruths sold to us about our pain is a radical act. Fighting for our pain to be heard is a way of affirming its existence–affirming our existence. Not just with illness and ability, but with any marginalized identity. So much of the work of healing consists of wrestling with believing our reality.

A capitalist, ableist, white supremacist, gender-essentialist society will not give a voice to our pain. It forces us to do it ourselves.

Life In Status Epilepticus, Or, What To Do When You Think You’re A Jellyfish

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The Jellyfish

One day she awoke in her room

And discovered she had become

A jellyfish

Her tentacles retracted

Her body shrunk

And she sunk to the ocean floor

She had neither a brain, nor a heart

And she realised she was a butterfly

Who had reverted to its cocoon

A chicken

Who had crawled back inside its egg

She had become a blueprint

Humans would try to use without success

To potentially cycle indefinitely

Between baby and maturity

Maturity and baby

But she realized regeneration

Was a pendulum between

Good death and bad death

Bad death was to lose fertility

Good death was to accept

Damaged crops and replant

But what could she do as a jellyfish?

A jellyfish had no hands to hold

No legs to chase

No lips to kiss a lover

No time to waste

What is the point of living with no love to give?

No thoughts to share?

No lungs to breathe?

One day she awoke in her room

And realised she would never die

Her tentacles retracted

Her body shrunk

She sunk to the ocean floor

And never came up for air.

‘The Jellyfish’ – Claire Fitzpatrick, 2017

1.

In 1894, railroad worker Phineas Gage changed the study of neuroscience forever. His job was to clear rocks for railway tracks, however, one day his iron rod – which he used to tamp down explosives before lighting the fuse – scraped the side of a pile of rocks, igniting a spark which set off the gunpower prematurely. The explosion sent the iron rod straight through his left eye, into his skull, through the back of his head, and back out to the ground almost thirty metres away. Miraculously, Phineas survived, yet became unreliable, partial to swearing and inappropriate remarks. Because of the sustained damage to his frontal lobe, Phineas developed Epilepsy as well as Witzelsucht, a neurological condition characterised by the impulsive and often uncontrollable desire to tell jokes, puns, and pointless stories. In 1860, at the age of 36, he died ‘in status epilepticus,’ described as a single seizure which lasts more than five minutes, or two or more seizures within a five-minute period without the person returning to cognitive normality between them. [1]

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Book Review: The Biopolitics of Disability by David T. Mitchell and Sharon L. Snyder

The term “biopolitics” was first ushered into wide use in a variety of academic fields of inquiry by French theorist Michel Foucault during his lecture series “Society Must Be Defended,” delivered at the College de France in the late 1970s. In a nutshell—and a simplified one at that, for the purposes of this review—biopolitics refers to the overall control of citizens’ bodies and states of being by state apparatuses, and the ways in which this control shows up.

A biopolitical lens can be applied to a variety of current and political events that have to do with bodies, the state, and control—from U.S. presidential candidate Donald Trump’s fixation on building a wall between the U.S. and Mexican borders to keep “illegal immigrants” out, to the recent panic in the U.S. over the so-called “opioid epidemic” that (conveniently) leaves out the perspective(s) of people with chronic pain who depend on opiate medications to have some semblance of a normal life—the effects, positive and negative, of biopolitics are everywhere.

George Washington University Professor of English David T. Mitchell and his co-author Sharon Snyder convincingly and aptly examine the implications of 21st century, neoliberal biopolitics for people with disabilities in their new book The Biopolitics of Disability: Neoliberalism, Ablenationalism, and Peripheral Embodiment. The book’s central thesis argues that neoliberalism in the 21st century–which, in Mitchell’s words, “involves strategies of the seizure of the very materiality of life at the level of the individual” (8)—has made space for the acceptance of certain kinds of disabled bodies, but this comes at the direct expense of other disabled and marginalized bodies.

This conditional acceptance and welcoming “establishes a form of biopolitics within which nationalism and ableism come together.” Of course, some may argue that any acceptance—however conditional—of people with disabilities into the mainstream is good for all people with disabilities.

However, Mitchell and Snyder strongly contend that this is not the case. The conditional acceptance of people with disabilities who also happen to uphold certain neoliberal and abled norms—especially those regarding capitalist ideas of productivity, appearance norms, and ways of functioning—serves to push disabled people who cannot uphold those norms further past the margins of society. The conditional acceptance of disabled “heroes,” hyper-enabled sports stars, and the “Supercrip,” who is great at one thing and so inspiring to nondisabled people, are just a few examples of a neoliberal embrace of some people with disabilities, to the ultimate exclusion of others.

Mitchell and Snyder’s first chapter, “From Liberal to Neoliberal Futures of Disability,” outlines how this acceptance/exclusion process works, and how biopolitics influences who gets left out and who is accepted by state apparatuses, the media, and systems of nationalism.

A “conditional acceptance” of specific disabled bodies also has implications for people whose disabilities are unpredictable, not visible to the naked eye, or cast aside by nondisabled people in ways large and small because they are thought to be “not really disabling.” For example, think of the many jokes regarding Restless Leg Syndrome and Chronic Fatigue Syndrome that every hack comedian thinks are just hilarious, and the many internet comments arguing that fibromyalgia is not a real illness.

Mitchell and Snyder’s points about which kinds of disabled bodies get included in the nationalist project versus which do not were extremely compelling to me, both as a longtime reader/student of Disability Studies and as a person whose disability (fibromyalgia) forces me to walk a fine line—often with my cane—between a kind of conditional acceptance in certain settings and outright dismissal in others.

The book’s second chapter, “Curricular Cripistemologies; or, Every Child Left Behind,” is its strongest; here, Mitchell and Snyder critique academia’s overall silence when it comes to disability and disability studies—except for when universities or individual departments are able to use students or professors with disabilities to check the box for “diverse” or “multicultural” funding or hiring initiatives. Conditional acceptance rears its monstrous head again in said initiatives; some people with disabilities are accepted, but some are not.

As the authors explain, their critique in this chapter “centers on inclusionism as a neoliberal gloss on diversity initiatives that get some disabled students in the door while leaving the vast majority of crip/queer students behind” (80). The questions that Mitchell and Snyder ask here are not simply hypothetical or theoretical. There are some very real boundaries that keep the majority of people with disabilities from accessing—or thriving in—higher education.

Various chapters in The Biopolitics of Disability cover such wide-ranging topics as “disability futures” in the classic film Midnight Cowboy, the politics of disability film festivals, disability representation in independent films, online support groups for rare health conditions and the navigation of the medical industry, the labeling of certain people with disabilities as “unproductive,” and the implications of said labeling for modern capitalism.

I found this book both informative and a great call-to-arms for Disability Studies, the academic Humanities, and the disability rights movement. If you’ve had trouble understanding terms like neoliberalism, biopower, and biopolitics in the past, you should think about taking a look at this book—Mitchell and Snyder provide comprehensive definitions of these terms and real-world examples of these ideas in action. If The Biopolitics of Disability seems like a book that you would enjoy due to its content and subject matter, I’d encourage you to check it out.

The Biopolitics of Disability (ISBN: 9780472052714) is available now from the University of Michigan Press. Image via University of Michigan Press.

Nervous Systems: Part 7

Previously: Parts 1, 2, 345, and 6. Image descriptions can be found below the .jpgs, under the “read more” tag; click the images for larger versions.

Regarding the “tender point” test referred to in this installment : In 2010, the American College of Rheumatology (ACR) revised the diagnostic criteria for fibromyalgia so that rheumatological exams do not utilize the “tender point” test. The new diagnostic criteria include a Widespread Pain Index (WPI) and Symptom Severity (SS) Scale.

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It’s Personal: Some Reflections on Nonfiction Writing and Chronic Illness

When it comes to actually sitting down and writing, there seems to always be something mental or physical that’s in my way. I suck at poetry, so no writing poetry for me, even if it’s just two or three lines. Short stories? I am terrible at those, too, although I occasionally manage to write one and then forget about it, only to find it years later stuffed away in one of the 25 or so computer desktop folders that I’ve created for my writing. I tried writing a sci-fi novel once, starting when I was 13, stuck to it for a good two years, and only gave up entirely when my very own case of major depressive disorder in high school basically sucked that one out of me.

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