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Chronic Illness, chronic pain, Guest Posts

Hysteria & Me: An Ancient, Misogynistic Disorder is Killing Women

September 27, 2020
SYMPTOM

By Elizabeth Land Quant

On a December morning in 2017, I woke up face down next to my treadmill. The week before, a rheumatologist at Cleveland Clinic had diagnosed me with fibromyalgia, which she described as an “exercise depravation syndrome,” and told me that aerobic exercise would help my symptoms. “As long as your heart races a little and you sweat,” the doctor’s handout advised.

Now, as I lay on the floor, my heart raced like a trapped bird banging against my chest. I couldn’t take a deep breath. My pants were wet, from urine and sweat, and the nerves in my hands and feet were burning. I needed to throw up. Between the gray-tinged double vision and shaking in my legs, I couldn’t stand up, so I crawled across the floor and slowly pulled myself up the stairs.

After cleaning up my vomit, I vowed to follow my doctor’s advice and try even harder. Her handout said: “First, it is very important to know that even if the pain is worse after exercise, no injury to the body occurs.” But the next day when I tried to exercise things got worse. As the days wore on, I was unable to chew food. My neck muscles would not support my head, and I had to drink my dinner though a straw with my husband’s help. My chest hurt with every breath. I was incontinent, and my intestines became immobile. The burning in my hands and feet got so severe I couldn’t wear socks or gloves. My anxiety and depression were no longer controlled by my meds. I developed double vision and my left eye sagged. I couldn’t take care of my family anymore, or myself.

My husband worked a fulltime job, and we had three teenagers with medical and school needs. With my mother’s and sister’s help, we cobbled together a way to keep everyone fed, up on schoolwork, and attending most doctor’s appointments. Our daughter ran errands for the family after she got off work. My father-in-law picked up our boys from school as much as he could, with Uber as our back up. Dinner was made by anyone who had time that night, or we ordered. I missed countless school events like my son’s football games and my daughter’s high school homecoming coronation, memories we should have made together. I was so thankful that we could get by, but I constantly felt like a burden and a failure.

To get help, I traveled from my home in Minnesota to the Cleveland Clinic with the hope of finding answers for these symptoms. I chose this clinic because its website advertised  a clinic that works “collaboratively with multiple consultants and departments.” But instead of finding answers, after I told her that some of these symptoms had started in childhood, my rheumatologist focused her questions on whether I was traumatized as a child. I didn’t know it at the time, but the rheumatologist that I was seeing is a renowned expert in fibromyalgia, and was head of the Fibromyalgia Clinic at Cleveland Clinic.

“You’ve got severe fibromyalgia. I’m recommending intense psychiatric rehabilitation,” she said.

I found out years later that this rheumatologist conducted a study on how past abuse can indicate the severity of fibromyalgia. Her conclusion was to “recommend that abuse should be inquired about in all patients evaluated for FMS as this may give more clarity to the nature and severity of the FMS presentation and prompt the need for psychological interventions.” This doctor also recommended that severe fibromyalgia patients should not be evaluated for other diseases.

Soon after, back in Minnesota, I was erroneously diagnosed with somatic symptom and related disorders (SSRD), a psychiatric condition that is “characterized by an intense focus on physical (somatic) symptoms that causes significant distress and/or interferes with daily functioning.” They claimed my symptoms were caused by a mental illness and not a physical disease.

For decades, my anxiety, depression and physical symptoms had been attributed by doctors to my own actions. For instance, I was told by a gastroenterologist that my inability to swallow food and my intestinal motility issues were most likely brought on by limiting certain foods from my diet, like gluten and dairy (but if I ate those foods, I got hives and threw up). Other doctors said that my symptoms were present because I “worked and exercised too much and didn’t rest,” or that I was “resting too much” and became deconditioned. I was scolded for being underweight. I was scolded for being overweight. I focused too much attention on my kids and not enough on myself, causing unneeded anxiety. Another doctor said that I focused too much on myself by meditating and googling which vitamins to take, causing an unhealthy obsession with my health. I was told that I just “didn’t like getting older” and was depressed about it. So, all my physical problems – double vision, throwing up, falling down, urinating all over myself – were my fault, and all my therapy sessions, meditation, medicine, exercise, and healthy diet weren’t helping nearly enough, and somehow were making me worse. I had wondered if my kids and husband would be better off without me.

***

I started researching my new diagnoses, and found out that the diagnostic criteria for fibromyalgia and SSRD placed a red flag on patients, primarily women, who have multiple symptoms. Because I fit the criteria for these two diagnoses, I was no longer a candidate for further testing or referral to other specialists. An article in the American Academy of Family Physicians’ magazine states that SSRD “should be considered early in the evaluation of patients with unexplained symptoms to prevent unnecessary interventions and testing.” With approximately 12 million US adults misdiagnosed every year, and women and minorities 20 to 30 percent more likely to be misdiagnosed, how many women are having their “unexplained symptoms” dismissed as part of a somatic illness?

How did we get to this point in the twenty-first century where women are still repeatedly dismissed and misdiagnosed? Women are less likely to be administered pain medicine than men in emergency room settings. Women have a 50% higher chance than men of getting an incorrect diagnosis after a heart attack, and they are 30 % more likely to have a stroke misdiagnosed. Black women and other women of color face even larger disparities in the health care system compared to white women because of racial bias and discrimination. Stigma and discrimination against Transgender people limit their access to healthcare, negatively affecting their mental and physical health. A study “Women With Pain” found that “women with chronic pain conditions are more likely to be wrongly diagnosed with mental health conditions than men and prescribed psychotropic drugs, as doctors dismissed their symptoms as hysterics.”

This brought me right back to college, where a professor asked the question “what is the Greek word for uterus?” When no one answered, he paused for a dramatic beat, and then said, “Hystera. Where we get the word hysteria.” As the women in the class shifted lower into their seats, the men laughed, loudly. There even was a celebratory high five. I will never forget the absolute mortification I felt, and how instinctively I hurried to cover my scars under my shirt from multiple endometriosis and ovarian cyst surgeries. I felt betrayed by my own body.

***

In ancient Egypt, Greece, and Rome, hysteria was considered a women’s condition whose physical symptoms were thought to be attributed to a wandering uterus. Over time, the blame of these various hysteria symptoms shifted from a physical cause to a mental one. In the late 1800’s, the psychoanalyst Sigmund Freud posited that a woman’s psychological stress “converted” into physical symptoms that caused a hysterical state. Also during the Victorian Era, new diagnostic terms like “Briquet’s Syndrome,” named after French physician Paul Briquet, were given to women experiencing hysteria symptoms such as nausea, dizziness, fast heartbeat, pain all over, blurry vision, and weakness. Briquet’s Syndrome was renamed somatization disorder, which eventually became somatic symptom and related disorders. Hysteria was officially removed from the Diagnostic and Statistical Manual of Mental Disorders in 1980, but the stigma of a woman’s illness with a name meaning “melodramatic or attention seeking behavior” still remains.

***

At numerous doctor’s appointments, I was given the Patient Health Questionnaire – 15 (PHQ-15), a tool frequently used to diagnose fibromyalgia, SSRD and multiple mental illnesses, which has symptoms that are also associated with diseases that primarily affect women. The tool listed 15 symptoms and a rating scale of how severely these symptoms affected your life. Each time I checked off most if not all of the symptoms listed, including chest pain, fatigue, heart pounding, nausea, pain, shortness of breath, and stomach pain (refer to chart for complete list). In filling out the PHQ-15, I thought I was helping the doctor get closer to a diagnosis and treatment. Instead, I was checking off a list of “somatic symptoms” that pointed them away from a physical illness and toward a psychiatric disorder like SSRD. Small fiber neuropathy, autoimmune disease, ovarian cancer, autonomic dysfunction, heart disease, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Ehlers-Danlos syndromes, and now long-term Covid 19, conditions that affect millions of women, all have symptoms listed on the PHQ-15, and on screening questions for fibromyalgia. Another devastating problem with this set up is that more and more women are afraid of speaking up about their mental health symptoms, like I was, for fear of their physical symptoms being overlooked, or labelled as psychosomatic.

Women with mental illness, and I include myself in this group, are at risk of their mental health diagnoses being used as a red flag, halting the diagnostic process of their physical symptoms being looked into as part of a physical disease. More than 1 in 5 women in the US have experienced a mental health condition in the past year.  In our modern understanding of mental health, we believe that physical symptoms often manifest as a result of a mental health disorder. The problem is not that doctors identify mental health disorders as one potential cause of physical symptoms. The problem is that those same physical symptoms could also be caused by a number of physical diseases. This is the point where the effective process of a proper diagnosis breaks down. Instead of testing and ruling out physical disease, many doctors jump to the assumption of the absence of physical disease. Having a mental illness does not make us immune to having a physical disease.

Seventy-five percent of Americans with autoimmune disease are women, according to the American Autoimmune Related Disease Association and it takes on average three years and four doctors to get a diagnosis of an autoimmune disease. The study “Frequency of Symptoms of Ovarian Cancer in Women Presenting to Primary Care Clinics” shows that even though 89% of women with early stages of ovarian cancer have a distinct set of symptoms (bloating, abdominal pain, urinary symptoms, fatigue, back pain, constipation) that they report to a doctor, “only 20% percent of cases are caught in an early stage.” How many of these women were dismissed by their doctors because their symptoms fit a somatic illness or were written off as general reproductive issues that halted further testing?

***

About a month after the Cleveland Clinic appointment, my family and I went on vacation in Florida. I almost didn’t go, but this was the only time we could coordinate a trip with all five of us. I spent most of my time in the bathroom, throwing up sips of water I kept trying to swallow. I took anti-nausea meds, Tylenol, Ativan and Imodium to sit with my family by the pool, until I would have to lie down on the bathroom tiles again.

By the time we flew home, I was severely dehydrated and doubled over in pain, but refused to go to the ER for fear I would be accused of faking my symptoms for attention or told that this was my fault and I needed to exercise more. My husband begged me to go in, and it was there that a doctor first mentioned “autonomic disorders,” and autoimmune nerve diseases that could be causing my various symptoms. When I got home from the hospital after getting IV fluids, I looked up my medical records from Cleveland Clinic. The doctor who diagnosed me with fibromyalgia wrote in my appointment notes, “has not been diagnosed with small fiber neuropathy,” a disease that could explain most of my symptoms. It would have been so easy for this rheumatologist to refer me to one of the few nerve labs in the country for a biopsy, right in her same clinic.

***

The diagnosis of fibromyalgia has helped many women get symptom relief and disability services, but has also prevented countless women from receiving a correct diagnosis. Studies show that half of fibromyalgia patients are thought to have small fiber neuropathy, a disease that Johns Hopkins describes as damage to the peripheral nervous system, the nerves that send information from the brain and spinal cord to the rest of the body. This damage can cause symptoms ranging from pain, to gastrointestinal issues, to difficulty breathing and an irregular heartbeat.

Fibromyalgia shares many of the same symptoms of small fiber neuropathy (SFN), but the main difference is that SFN can be definitively tested for and treated, whereas the underlying causes of fibromyalgia are unknown and treatments only address symptoms. A quick and painless skin biopsy can confirm the SFN diagnosis, and if positive, further diagnostics can find a medical cause of the neuropathy in the majority of patients. Prompt treatment can prevent further damage to the nerves, and in some cases, the medical cause of small fiber neuropathy can even be cured.

After researching my symptoms, I convinced an open-minded neurologist in Minneapolis to conduct testing including a skin biopsy and a tilt table test. The biopsy revealed severe small fiber neuropathy, and further testing found Post Orthostatic Tachycardia Syndrome (an autonomic disorder that affects heart rate, blood pressure, and causes many other symptoms). I was also diagnosed with Myasthenia Gravis, a progressive, potentially life-threatening neuromuscular disease which can be fatal with too much exertion (so much for “even if the pain is worse after exercise, no injury to the body occurs”). A year later I was diagnosed with a hypothyroid disorder and asthma, both of which I was told I have had for years. I could not have fought for and received the right tests if I didn’t have a good health care plan, time to research, and money to pay for thousands of dollars of out of pocket costs.

I had missed out on so many of my kids’ events, as well as countless birthdays, anniversaries and holidays. If I had been given a tilt table test or a nerve biopsy instead of being continually misdiagnosed, maybe I could have started the right medications and been more present in my children’s lives while they were still growing up.

***

Being disabled itself doesn’t upset or scare me. I learned that I can live a full and happy disabled life by watching my father work and travel the world with his portable oxygen tank in his backpack. I’m angry about all the time I wasted blaming myself for a disease that was not my fault and all the years fighting for tests and medicine that could have slowed down or stopped the progression of these diseases. However, I am privileged to have the resources I need to live a comfortable life that allows me time to take care of myself.  It is unacceptable that in this country only well-to-do people with disabilities are able to live comfortably, while so many people are forced to fight to obtain correct diagnoses, assistance, adequate health care and safe housing.

When doctors are taught to hold back diagnostic testing based on the number of symptoms a patient has, and considering that so many illnesses that affect women have multiple symptoms, including potentially deadly ones like ovarian cancer, it’s not hard to understand why so many women have been misdiagnosed.

Elizabeth Land Quant is an autistic, queer, disabled writer, wife, and mom to three grown kids, two cats and a very spoiled dog. She studied Latin, Greek and political science at St. Olaf College, and splits her time between Minneapolis and Hot Springs, Arkansas. She researches and writes about her experiences with disability, autism, family, and her undying love for TV. Elizabeth writes poetry, fiction and nonfiction and is currently writing her first novel.  She has been published in Disability Acts.

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Guest Posts, healing, Illness

I Got Sick

September 3, 2020
sick

By Dakota Antelman

I had a favorite phrase when I was young.

“My body hates me.”

I did, after all, spend quite a bit of time in hospitals.

First, there was the epilepsy. I underwent four EEG monitoring procedures on my brain where doctors glued dozens of electrodes to my scalp. Each time, they’d send me home wearing an electric ponytail of wires that slid down my back and into a string bag carrying a shoebox sized computer. My mother hovered through it all, staying close, playing the Brandi Carslile music she loved when we drove to and from the neurology clinic.

The doctors didn’t like what they saw on any of those EEGs. So, they diagnosed me with a mild form of epilepsy and prescribed me Depakote, an anti-seizure drug. A month later, my body exploded in hives in an anaphylactic response to the medication. I switched drugs. The seizures were well controlled with minimal side effects from then on.

“But it’s worth keeping an eye on,” my neurologist said.

Then there was the Marfan Syndrome workup. My mom said I looked too tall and was worried that my pre-teen propencity for spraining my gangly ankles or jamming my fingers while wrestling with my brother could actually be the result of a connective tissue issue. Both those symptoms, she read, were common of Marfan patients.

Her fears proved unfounded. But all that did snowball into a series of EKG monitoring procedures that, in turn, led to ultrasounds examining my cardiovascular structure. Those found that I had grown up with an artery wrapped around the wrong side of my heart. It wasn’t necessarily dangerous.

“But it’s worth keeping an eye on,” the cardiologist said.

Around the same time, doctors identified a curve in my spine. They diagnosed me with scoliosis and fitted me with a custom plastic brace. For two years, I slept in a clamshell contraption that encased my entire torso and pressed a metal bar into the space just below my collarbone.

Every night, I stood dejected in front of my mother or father to be ratcheted into the brace by the three velcro straps on my back. Each morning, I woke with deep gouges in my flesh from the seams of my undershirts.

I would dress for school drenched in the sweat I’d formed under unbreathable plastic skin.

“But at least that got better,” my orthopedist said.

As I finally tossed the brace to the trash, though, my dentist referred me to an orthodontist who, in turn, referred me to an orthodontic surgeon. She told me my conflicting crossbite and underbite were so severe I would need major surgery to correct them. At my parents’ suggestion, I took a year off of school before college to let doctors chisel my jaw loose from my skull and pin it back in place with 42 titanium screws and plates.

Finally, in tandem with all of that, my mental health collapsed in my senior year of high school. Lifelong anxiety crippled my studies and depression led me to the brink of suicide. I spent a week in a locked inpatient psychiatric hospital where I befriended everyone from a 71-year-old heroin addict to a girl my age who could not speak and who tried to kill herself twice during the week I knew her.

The boy with scoliosis, a misaligned jaw, epilepsy, depression and anxiety, I learned to love the hospital waiting room for its absence of blood draw needles and antibiotics that made my stomach churn. I began to think I looked cutest in hospital gowns.

But, looking back, it doesn’t even feel like those days lost to the warp of hospital time were even mine to begin with. The world gave me those ailments. My mom got me to the hospital. And the doctors ruled my days when I was there.

Thus, for all my nights spent hearing the beeping white noise of blood oxygen monitors and the sounds of nurses’ clogs in the hallways, it doesn’t feel like I ever got sick until the eve of my 20th birthday.

***

I went to the doctor just two days after Christmas in 2019. I had been sick with a brutal sore throat since finishing my first semester at college 13 days earlier. My neck also ached. My lymph nodes were swollen.

An urgent care doctor at my primary care clinic gagged me with a strep test. She shoved a flu test up my nose and sent me upstairs for bloodwork.

I didn’t have the flu. And I had dodged mono despite several of my friends coming down with that in the previous months. Most of my hormones were normal and the strep test that came back positive didn’t worry the doctor too much. She assigned a single course of antibiotics.

The grape sized white lump on my testicle, though, did worry her.

“That’s something,” she said.

She ordered an ultrasound that came back inconclusive. She referred me to a urologist.

I scheduled the appointment but, in a matter of days, realized I could not wait for it to come. The growth quadrupled in size after the ultrasound. It hurt to walk. I was scared. My dad nearly died of testicular cancer in his 20s, after all. The stuff was in my DNA.

So I checked myself into the ER the same afternoon I moved back into college for my spring semester. After a half dozen doctors examined and interrogated me about my medical history, one eventually came into my room and told me they would conduct an emergency operation to remove and analyze the top part of the still unidentified mass. They couldn’t name it, but it looked bad.

***

A nurse later told me that the acidic nature of the growth had neutralized the numbing cream and injections the surgeon tried to administer.

I felt everything.

Now, my throat hurt from the hot heavy gasps I took as the knife cut into my skin.

The side of my hand showed red, bearing an almost cartoonish bite mark from where I had clamped down to avoid cursing in a pediatric ward.

And I felt the dry salt of sweat clinging to my face and chest after erupting forth when I tightened my muscles in pain.

I collapsed into the arms of my roommate who had been waiting outside the ER doors. I was exhausted. I felt violated.

***

I wrote part of this essay the night before the follow up appointment after that ER visit. I didn’t know what the biopsy found. I didn’t know if I would soon be in an operating room under bright light waiting for an additional surgery.

I know the answers to those questions now. I still don’t want to include them. Although I will say I’m better now and free of any cancer.

I leave this story incomplete because this is not the story of a cancer scare. And this is not a trauma memoir. This is a testament, a macabre note to self about the ways these moments somehow felt grimly empowering.

Throughout my childhood, I went to the hospital when my mother told me to, or when my primary care physician found a problem during my annual physical.

This time, though, I needed no prodding. It was my gut instinct and my pain that made me peel my body off my dorm room floor and say, “I’m going to the ER.”

Throughout my childhood, my mother drove me to the hospital regardless of who I saw there. She loved me. She wanted to take care of me. And I’m grateful for it all. But, with few exceptions, she was the one always transporting my body from my safe home to the unfamiliar hospital. That meant she was the one effectively submitting my body to the often-invasive work of these doctors.

This time, though, I did the transportation. I walked down my stairs. I hobbled down the cracked streets of Chinatown, dodging puddles and waiting for walk signs. I stared confident mature daggers at building numbers and marquee style signs reading “Main Entrance” and “Emergency Room.”

I walked into that building. I placed myself before the triage nurse. And I said “I need help. Do whatever you must.”

Throughout my childhood I knew that the body named “Dakota” was often sick. I knew when that body hurt, and when that body’s brain spun with anxiety over needles, thus passing out and scaring nurses. I knew that body hated hospitals with every bent bone, misfiring neuron and deformed artery it possessed. But I never did feel like I was sick.

When I was with all those doctors, I didn’t have to look inward and articulate what I felt. I didn’t have to interact while they verbally or physically invaded my sick body. My mom, or my primary care physician’s referral did all of that for me.

Thus, the true agony of these years was not the pain, the surgical rehab, the discomfort of the back brace, or the confusion of waking up after passing out. It was, instead, internalized automatic dissociation. My body wasn’t mine when I laid on those tables. It was a slab of diseased nonverbal meat being cleaned and purified to be fit for the normal human world.

This time though, I didn’t feel that way. I got myself to that hospital. I articulated my pain and asked for help to relieve it. That meant that, as doctors worked on me, I was the one asking, “What are you putting in my IV?” I was the one saying, “I have a low pain tolerance, I will probably pass out.” And I was the one guessing “What’s next?”

Self-advocacy forced me to come back into my own body that day in the ER.

And that independence wiped the phrase “My body hates me” from my lexicon. My body alone didn’t get sick. No, my body and I were one.

I got sick.

Then I got help.

Then I stepped into the hospital vestibule. The door didn’t open, so I waved defiantly at the black box atop the metal door frame, a sick boy stumbling out of that hospital with unfamiliar association and confidence.

Now, the motion sensor saw me. And the door opened.

Dakota Antelman is a young freelance writer from Massachusetts with experience in traditional AP style journalism and personal essay/column writing. His essays have been published in a variety of outlets including the non-profit, Let Grow.

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Guest Posts, healing

I Diagnose Other People for a Living, but No One Can Diagnose Me

July 15, 2019
surgery

By Melissa Neff

My psychology career has been devoted to helping other people learn about themselves. But when chronic back pain usurped my life, no one could tell me what was wrong with my back, or how to fix it.

As a psychologist in private practice, I divide hours into 15-minute segments, punctuated by the beep of a timer and my client’s choice of Batman or emoji stickers. A few weeks ago, I handed Jaden, an energetic and wiggly 6-year-old, a pile of putty to fidget with as we waded through an IQ test. Through a projective storytelling task, I learned what monsters were hiding under his bed, and what type of laser proton field he plans to construct to keep them out.

When Jaden’s parents return for the results, I explain, “Assessment is like pieces of a puzzle. Each test tells me something about your child.” Test by test, I plot out Jaden’s abilities relative to other kids his age on a giant white board, dotting his exceptionalities and weaknesses in purple marker. “He can solve 8th grade math equations, and he is smart enough to grasp that one day he will die; however, this thought, which most 6-year-olds can’t yet contemplate, terrifies him. So, he has constructed a laser field as a way of coping with demons that he does not yet understand.”

I inundate Jaden’s parents with labels – Gifted, ADHD, Autism Spectrum Disorder – labels which do not define him, but which describe him so we can strategize how to best help him. When Jaden’s parents leave my office, I want them to understand their child better. I want them to feel supported and validated about what they’ve always known to be true about their child, which often, no one else saw or believed. I want my clients to have answers.

Like many psychologists, I have, too, have spent some time on the other side of the couch. Like Jaden, I, too, have been plagued by anxiety. When I was still healthy, I spent nearly every day running and dancing and hiking those thoughts away until they melted into a pool of sweat at the back of my tank top.

But all of that changed six years ago, when I twisted my left foot the wrong way while shaking my booty to Rihanna during a high-intensity dance class. When my foot didn’t heal, the podiatrist shoved it in a boot for two months, which slanted my pelvis and led to a gradual stabbing in my low back that didn’t remit when the boot came off. I began to curse the Devil Spot, the dwelling inside my low back where it felt as if tiny trolls were stabbing me from the inside, punishing me for a transgression they had yet to reveal.

No matter how much stretching and resting and icing I did, the Devil Spot nagged at me, pleading to be heard like a tantruming child. Its screams grew louder and louder until they were all I could hear. Pain eclipsed my every waking moment, and suddenly, I became one of 25 million people in America with chronic pain. At work, I couldn’t stand up and talk to my clients for longer than 3 minutes. At home, it was all I could do to not toss a spatula across the kitchen, infuriated that I couldn’t stand for long enough to sauté a goddamn pan of broccoli.

I threw all of my free time and savings into rehab. I just wanted to dance again, to run again, to feel my body sherpa up and down mountainous hiking trails the way it was made to. My osteopath glided and jerked my left leg until my pelvis straightened, explaining in carpenter-speak how a normal pelvis should connect to the spine without jamming. My chiropractor jerked me back into place, asked me for my copay, and rushed me out the door. After each adjustment, I slid back into crookedness, but I kept going back for more because I didn’t know what else to do. My physical therapist urged me to try water aerobics. After about fifteen minutes doing low kicks with the 80-year-old women in my class, the Devil Spot detonated, forcing me to hobble out of the pool in tears.

Pain became the only thing I could think about. Nothing I did to stop it helped. In fact, every intervention seemed to generate more pain. The only thing everyone agreed on was that I should avoid back surgery. Failed back surgery is so common that it has its own diagnostic code.

Months passed. Years passed. For a while, I sought relief instead of fixes. I tried every type of massage –Hawaiian Lomi Lomi, deep tissue, and Rolfing. I begged Chinese doctors to poke my feet with long acupuncture needles. I asked a woman who saw angels to clear up energy from my past lives. The stabbing would relent for a day or two, but never more. So, I stopped. I stopped getting adjustments. I stopped trying to hike. I stopped at my third physical therapist. I stopped having dinner parties. I stopped getting invited to dinner parties. I stopped having sex or only had it in the dark, where I could covertly wince.

More months passed. Each day, I averaged about a 7 on the pain scale. My stomach ached from popping Ibuprofen like Tic Tacs, but I needed them to get me through the day. I hated my life. I hated my job. I hated myself. I was becoming a person I didn’t recognize, a person whose fat clothes didn’t fit, a person who got her only endorphins from Dairy Queen Oreo Blizzards. I needed answers. I needed to find someone like me, someone who would sit with my images, get out their white board, and contemplate my symptoms until they morphed into the correct diagnosis and paved a road towards treatment. I didn’t care anymore that this might mean someone drilling my spine apart, filleting me like a fish, and rebuilding me piece by piece. I was out of money and patience, controlled by something I couldn’t get under control no matter how hard I tried.

Dr. Keller, my pain doctor, agreed that it was time to consult with surgeons, who are known for their diagnostic precision.

Surgeon Number One suggested there might be a tear in my disc.

Surgeon Number Two diagnosed sacroiliac dysfunction. If he just literally could nail together my pelvis to my spine, it would become less mobile and less painful, he said.

Surgeon Number Three, the arrogant one who I was sure would break the tie, turned around slowly in his leather chair and said, “I’m not sure why you’re here. There’s nothing wrong with your back.”

“Excuse me?” I asked.

“There’s no surgery I would do on your back, because it’s totally fine.”

The tears I’d been holding back busted through, my face opening into a floodplain. “It’s fine? Then why am I in so much pain? Why does my back stab so badly that I can I barely stand, or concentrate? Why can’t I ride in a car for longer than an hour? Why can’t I get through Costco without an automated cart?”

“You just need physical therapy.”

“I’ve tried that. Three times, with three different therapists. It hasn’t worked.”

“Acupuncture can also help.”

“I’ve tried that. Twice. Didn’t work.” I breathed back the snot dripping from my nose. When he didn’t offer me a Kleenex, I wiped it away with my sleeve.

“Do you think there’s a tear in my disc?” I asked. “That I need a fusion?”

“No.” But he leaned in closer as he noticed my tears.

“You know, I’ve had some patients with similar pain. You know what helped them? Therapy. They go see a therapist, talk a little bit about their family, and in three, four months – their pain goes away.”

Clearly, this asshole had omitted reading the check-box where I’d listed my profession as “psychologist,” implying that I know something about this stuff. Had he read any of my check-boxes? Was he saying that I was crazy? That I had conjured this problem within my body as a way of dealing with my issues? Had he read the referral from Dr. Keller, who’d shot me with cortisone in my SI joint three times that year, issued me a handicapped parking pass, and sent me to this man for an actual answer?

In my car, my head fell on the steering wheel, dousing it with sobs. I wanted to call my partner to debrief, but what was the point? I was still at the same place, with no answers.

For weeks, I contemplated my choices. I insisted that my doctor perform the dangerous discogram that did, indeed, reveal a tear in my disc. I had a minor surgery to cauterize the disc. But when I started to move again, the Devil Spot ignited and raged on. I blew up balloons with my new physical therapist to pull more air into my left lung in an attempt to align both sides of my body. I let a different physical therapist put her finger in my vagina, inspecting my pelvic floor for tightness. I tried new medications. I cut down my hours at work. I forced myself to meditate. None of it helped.

Left without a clear direction, I made a radical choice: to have a surgery that wouldn’t fix the problem, but which would mask the pain. An implanted spinal cord stimulator would send soothing signals to my brain to divert it from the perception of pain. I scheduled the surgery, but my insurance required me to have a psychological evaluation first. After laughing my ass off at the irony, I drove three hours south and sat all day in a fake leather chair like the one I had for clients in my office, checking off answers on personality inventories I’d spent years administering to other people. The psychologist gave the green-light, but on the eve of my surgery, my gut rumbled with uncertainty. Scanning my brain for a last-minute fix, I recalled a conversation I’d had with a friend’s father years ago, who told me that a physiatrist, a doctor of the muscles, had saved him from back surgery. I Googled physiatrists, found Dr. Landon, who was new in town, and told Dr. Keller that I wanted one more consult before moving forward.

In his office a week later, Dr. Landon thanked me for sending him a three-page synopsis with all my provisional diagnoses and every treatment I’d tried. He’d reviewed that and my imaging the night before. He spent two hours asking me a series of rapid-fire questions to rule out all kinds of different disorders. He looked me in the eye and listened to my story. He offered me more Kleenex as I cried. He spent two hours examining my hips, pelvis, legs, and back. He told me that he had a few ideas about what might be wrong, and he labeled them all: Sacroiliac Joint Dysfunction. Pelvic Floor Dysfunction. Hip-Back Syndrome. Myofascial Pain Syndrome. He assured me that we would go down each rabbit hole, investigating symptom by symptom until I had my answers. He didn’t have a white board, but he did make a drawing on his iPad explaining how my hips might be causing back pain, which made me consider my symptoms in a new way.

Dr. Landon asked me to postpone surgery until I tried the rehab program he created for me. “I will do my very best to help you,” he said as I left, “But I can’t promise anything.”

In the safety of my car, I simultaneously grinned and sobbed, allowing child-like bawls to crawl up my chest and quake out my lips, loosening my grief like leaves on a tree that had needed a good shake to break free. Finally, I had found someone who would diagnose me with the same level of precision, empathy, and care as I did for my own clients. I always tried so hard not to cry, not to complain, not to ruin conversations by talking about my pain, but hopelessness had become a rock in my chest, hardening around my broken heart.

For the first time since the Devil Spot had made my life a living hell, I felt less alone.

Dr. Landon’s program is working. I can stand for 30 minutes instead of 3. I can do half of an old lady water aerobics class without tears. Last week, I walked into a gentle dance class and grapevined and kicked behind Dolores for ten whole minutes without stopping, and shouted with her along to Huey Lewis. The more I squat and lunge, the stronger the tissue around my disc becomes. I am forcing myself to meditate, and when I sit in silence, I learn things – about the way I sit, the way I stand, the way I don’t take in full breaths, how I hold in stress until it becomes a stabbing pain in my ass. Surgeon Number Three was right, even if he was a jerk about it; I needed to go back to therapy, because how I manage my emotions is a piece of my puzzle.

Twice a week in neurofeedback, my therapist attaches electrodes to the calming center of my brain. Twice a week, I leave feeling less anxious, and in less pain. I am noticing that when I have a bad day at work, the Devil Spot cramps and pulses much earlier than usual. As I lean forward to bear witness to other people’s stories of abuse and abandonment, my muscles clench more with the weight of their stories. When I am a receptacle for other people’s pain, my pain worsens.

In therapy, it is my turn to speak. I tell my therapist the truth: I am no different than my clients. I was born with big feelings, big reactions, big thoughts. I never felt safe expressing them until I met my current partner, who holds me when I cry and does not ask me to stop, who listens to my ideas and loves every part of me that’s big.

It has taken me forty-one years to realize that I’ve spent my entire life putting other people first. As a six-year-old, I became a mother to my mother. After my dad left, she secured two or three jobs at a time to make sure we had Gap jeans and could afford to play after-school sports, but there was no time for cooking, cleaning, or feelings. When I tried to tell my dad how much I missed him on visits, when tears welled up in my eyes and my words grew gummy, he insisted we change the subject because it was obviously upsetting me. For him, I joined clubs and earned scholarships, learned to courageously mute all my big feelings, and championed his marriage to a woman who smiled at me through gritted teeth to ensure that I wouldn’t take up any more of his time. It was the right thing to do – choosing attachment over acceptance meant that I would be supported, loved. When I headed off to a big city college, I felt brave, strong, and independent. By graduate school, I was on my way to becoming a logical, impenetrable adult. I had a life plan: I would help people with their big feelings, and run far up mountains away from my own.

But I didn’t respect myself. I didn’t know who I was if I wasn’t helping people. I didn’t know that my voice needed to be heard too, until the right people listened. Now, I’ve begun to stop and notice when the pain flares, and ask myself what I am feeling, not feeling, or not saying. I let myself feel it, although I am still learning how to say it.

The more I creep back into my body, which froze with pain until I felt safe enough to learn why, the more I release the trapped emotion from my back and baby the Devil Spot back to life, the less I want labels and procedures. I insist to Jaden’s mother, who cries when I label him with autism, that a diagnosis does not define a person, but is a valuable guidepost – a roadmap – to greater self-understanding. What I don’t say is: I understand. We are all jagged and broken in some places, but if we don’t let our edges come up for air, if we don’t let others see them, hold them, and heal them, they will fester and become unnecessary wounds.

Melissa Neff is a writer and psychologist living in Montana. Her fiction has been featured in WitLit and Wild Quarterly. She is currently writing a memoir about chronic pain and how it has unexpectedly healed her body, mind, and spirit. She is fortunate to spend most of her days supporting her differently wired clients to become their very best selves. You can follow her on twitter at @MelissaNeff17.

 

cancer, Guest Posts

Humane Treatment

December 11, 2017
humane

By Kimberly Maier

It’s either a cruel or humane twist of fate that I would end up with a sexy oncologist, I can’t decide which. He’s a fancy big-shot internist from the Mayo Clinic who moved to Oregon because he likes the outdoors or something. He has this absurdly charming strip of silver in the part of his hair. His voice is square, clinical. His mind seems to wander off while he’s talking, probably because he repeats the same boring death script to his patients every day. “The Oxaliplatin does tend to cause nausea, but I’ll prescribe something to alleviate that.” There’s a slight accent that I can’t place. He employs a strange downward intonation at the end of his questions.

He half-sits behind me, causing the sheet on the exam table to crinkle before tearing a v-shape in the paper between us. When I feel his breath on my neck my thoughts instantly liquify, spinning around the way soapy water in a coffee pot does when you rinse it. I clear my throat then open my bathrobe. At 26 years of age I am by far the youngest patient in the clinic and the only one who wears a robe, slippers and pajamas to each treatment. I can’t tell if everyone stares at me because of what I’m wearing or because I’m younger than the other patients by about 40 years.

The sexy oncologist puts his fingers in my armpits to see if my lymph nodes are swollen. They’re not. Continue Reading…

Guest Posts, Therapy

A Therapist Confesses: “I Really, Really, Really Can’t Help You”

November 10, 2017
therapist

By Sherry Amatenstein, LCSW

Strands of white hair erupting from her scrunchie, *Evelyn perches on the black pleather chair, greedily gulping from her Poland Springs water bottle and says: “Sherry, yesterday I had one of the worst experiences of my life.  No, probably the worst.”

In the ten plus years I’ve been a therapist I’ve heard numerous variations of this sentence, often followed by a statement like: “The neurologist confirmed my mother has Alzheimer’s. I feel guilty that I still hate her” “I caught my fiancé making out with my best friend” “Maybe getting fired for the fourth time in three years is a sign the world is better off without me”…

This is Evelyn’s latest ‘worst experience’: “I was at CVS buying shampoo and this Chinese guy brushed up against me. I know he did something to the shampoo to hurt me. Should I use the shampoo or return it? I’m sooo anxious.”

I’m never happy to hear that someone is suffering.  I became a therapist in midlife after a career in journalism because I feel driven to be an easer of pain, in a small way to make a permanent, positive stamp on the life of another. Continue Reading…

Guest Posts, Mental Health

The Year I Lost My Mind

May 24, 2016
doctors

By Sarah Fader

In 2011 I lost my mind. After I had Samara, I remember sitting in a hospital bed hysterically crying. When she would cry, I would cry. It hurt to nurse her. Every time I placed her on my breast to nurse I felt my uterus contracting and I yelped in pain like a puppy that had its paw stepped on.

I told my brother in the hospital when he visited “I don’t know how I’m going to do this. I’m scared.”

“Don’t worry,” he assured me, “mom and dad will help you if you need them to.” His words reassured me, but I was still scared. I was afraid to be a mother of two. I’d had Ari for almost three years and he was my one and only. I doted on him, I read to him, we painted colorful watercolor works of art together and we went out to eat muffins and juice frequently.

But now things were going to change. I had a new little person to take care of and add to our family. I had a little girl. She was beautiful and squishy and pink and I loved her immediately. However, I had no idea how I could love two human beings equally.

So I tried to be the best mother I could be. I did not stop. I went to the library with an infant and a 3-year-old, I went to the playground with an infant and a 3-year-old, I went everywhere with an infant and a 3-year-old. Continue Reading…