Doctors Archives

I Can’t Remember His Name

June 1, 2022

Something made me think of him; for days now, it has been bothering me: I can’t remember his name. I can recall many of our conversations, the gentle character of his voice, and the resignation in his eyes, but not his name. I’ve wracked my brain. I saw him almost twenty years ago for almost a year in twice weekly sessions. He was a former prisoner who had served stints for everything from petty larceny to armed robbery. I was a young intern working in a city hospital.

In prison, they strip you of everything: first your name, then your identity, and finally your humanity. You become a number in a brutal system. Except for him, this process had started way before he had landed in prison at 19. And now I, who cared for him deeply, seemed to have erased him too.

Mandated by the court to enter therapy, his chart had a red notation at the top I didn’t recognize: “Violence/aggression risk.” His diagnosis was “Schizoaffective disorder,” and the chart noted he had a long-term substance abuse problem. Reading on, I saw he had gotten out of prison two weeks earlier.

Though the notation gave me pause, I was afraid to say anything. It was the second month of my internship, the training year before getting my doctorate. I was at the very bottom of the psychiatry clinic hierarchy, and to put much faith in my own misgivings, not to mention voicing them, was more than I could risk. The first time we met, I made sure it was during daylight hours.

Eyes downcast, his large frame filled the doorway of my closet-like office. He had rich, dark skin, heavily pockmarked cheeks, and sat with a restrained intensity. I clutched my hands tightly while he began speaking so softly I had to lean closer to hear him, our knees almost touching.

“Do you have any trauma in your past?” I asked. Remaining silent, he cast his eyes around the office landing on an old globe tucked onto one of the upper shelves.

“What is that?” he asked.

“Oh, just an old globe. It’s probably very out of date.”

“Can I look at it?”

Unsure what to do, I took it down and placed it in his lap. Gently, he spun it around—his acorn-colored eyes lit up.

“That’s a gorgeous thing, huh?” he said. The whole world-right here.”

He spun the globe and landed his finger on a spot, “Vietnam?” He sounded out.

“Oh, it’s very beautiful. I was there last year.”

“What?” His head spun back toward me. “What is it like there?”

Before our session ended, I returned to my question: “Can you tell me about your trauma history?”

The light in his eyes doused; he almost whispered his response: “I’m a very bad person. I did something really terrible when I was a kid. And I’ve been paying for it ever since.”

I didn’t press him for details–our time was up.

After that, we began every session by spinning the globe and an exploration of the country his finger landed upon. He was always curious about the food. “Man, that sounds good,” he teased me one day after our imaginary journeys took us to a place where fried crickets were a popular street food. His trilling laugh filled the room.

When he was nine, on an unusually cold day in his small North Carolina town, he and his six year old brother climbed onto a frozen lake to explore. Halfway across, the ice cracked. Though he managed to scramble to safety, his brother fell in, disappearing in the pitch black water.

Afraid of being punished, he hid in a nearby forest for two days until–ragged, hungry, and numb with cold–he returned home.

“My father beat me with a switch this long.” He held his hands out to show me. “I didn’t feel a thing. I knew I was bad. I knew I killed him. I wanted him to keep beating me.”

After his brother’s funeral, his father barely spoke to him again. At 13, he was sent to live with relatives in Manhattan where, after nine months, they took him out of school, so he could work full time in their shop. His first arrest was at 19. Over three decades, he had never spent more than two years outside of prison.

“I just get a feeling, you know. I can’t take it. It builds up, and I know I need to go back.”

“But why?” I asked.

“I deserve the punishment,” he said, his eyes suddenly vacant.

One of the first things I did after meeting him was call his doctor, a grizzled veteran of the psychiatry ward.

“He’s delusional,” he said, off-handedly.

“But what delusion?” I had seen no evidence of this.

“Hang on, let me look it up in his chart.” I could hear him crunching something as we spoke. “Oh, he endorses hearing voices. You understand what that means right?”

I swallowed tightly. “Of course, I do.”

I brought it up at our next session.

“He asked me if I ever hear voices. I told him I do—it’s like… well these echoes in my head sometimes. Like if I get sad, I start remembering my brother’s voice.”

I stared at him. “You understand that’s not an auditory delusion-it’s a very normal reaction to having experienced a terrible trauma.”

“I didn’t experience trauma, my brother did,” he shrugged.

I called his parole officer, eager to understand the danger warning on his chart.

“Who?” I could hear the papers shuffling. “I have no idea about him–I just make sure he’s not breaking the rules, doctor.”

I began seeing him twice a week, prompting the officer to call me: “You know he’s supposed to come only once a week, right? And what is this about a job training program you have him in? You’ll see—he’ll be back in jail long before he’s ready for a job.”

At one point, I asked him about his substance abuse. “Your weekly urine tests are always clean. When did you stop using?”

“Oh, I don’t use,” he smiled ruefully. He explained that he had to snort coke to give him the courage to commit his crimes, which he pulled off using a plastic handgun. Of course, he tested positive after every arrest.

“But how can this be? Not only are you not an addict, you’re not psychotic. I’m going to change your diagnosis in your chart. And we’re getting you off these anti-psychotic meds.”

I was indignant, eager to have something to fix. I stopped mid-sentence because he was looking at me curiously.

“Why are you so worked up?” he asked.

“You shouldn’t have to live with the side effects–the dry mouth, the nausea, the headaches,” I responded, furious. “You shouldn’t have ever been on these medications!”

“It’s really ok-I swear it is. Change the chart, ok, sure, but it doesn’t change anything for me,” he replied, softly smiling, his eyes crinkling at the corners.

I changed his diagnosis to PTSD. His psychiatrist changed it back a week later.

He always greeted me with a huge smile as I met him in the waiting room, but as soon we began down the hallway to my office it was suddenly gone. I commented on it once as we sat in my office: “You always greet me with a smile. Then when you stand up, it’s like a light goes out. Why is that?”

He waited a second: “I’ve learned to walk like I’m invisible.”

“You’re… crying?” He looked baffled. “About me?”

“You’ve been dropped by so many people. It isn’t fair,” I blurted. We sat together in a thick silence, his eyes on the floor. After a while, he spun the globe, this time landing on Sweden.

“Wouldn’t it be great to go there someday? I bet there are big mountains of snow.” He grinned.

I nodded, wiping away my tears. “It really would. But I hear they eat smelly fish. Yuck.”

“Yuck,” he agreed.

One day, he came in looking depressed. “I don’t want it to be a surprise to you–I’m getting that feeling again.” I knew exactly what he meant but we both pretended I didn’t. The next week he missed his first session.

I wanted to change his circumstances, to make an inequitable system take note of him. I look back now and wince at my frenzied efforts—all that time I should have just been listening to him better. I didn’t want to believe that a trauma he experienced at age nine could mark him indelibly, or that the world could take a vulnerable kid and rub him so raw through racist, punitive systems that the only place he thinks he belongs is in prison. He tried to tell me that is exactly the world in which he lives, but I so wanted it not to be true that I disbelieved him.

When he left my office the last time, nothing much had changed–his chart still held the red notation, the vocational program had failed to place him, and those charged with watching out for him–the harried parole officer, the indifferent psychiatrist–still had no idea who he really was.

But he had changed me. Gone was my naïve faith that a wise and beneficent system would catch those who tumbled into its waiting arms. Now I believed otherwise: that I couldn’t even break his fall.

A few weeks later I received a slim, slightly crumpled, letter in the mail, addressed to the clinic. The return address was a correctional facility. I waited to read it until I got home.

“Please don’t think this is your fault Dr. G. And remember: you gave me something I never thought I’d have–you gave me the world.”
Years later, that letter sits in a long-forgotten file somewhere, one of the items that has done the most to disillusion me, but also make me a better therapist. Despite his impact on me, he too has slipped from view, like a dream that dissipates upon waking. I can’t even remember his name.

Sarah Gundle a doctorate in Clinical Psychology and a master’s degree in International Affairs from Columbia University. In addition to her private practice, she teaches courses on trauma and international mental health at Mount Sinai hospital.

***

Have you pre-ordered Thrust yet?

“Blistering and visionary . . . This is the author’s best yet.” —Publishers Weekly (starred review)

***

Statement on Black Lives Matter and support for social change

Chronic Illness, chronic pain, Guest Posts

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

September 27, 2020

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.

Anti-racist resources, because silence is not an option.

~~~~~~~~~~~~~~~~~~~~

Upcoming events with Jen

~~~~~~~~~~~~~~~~~~~~

THE ALEKSANDER SCHOLARSHIP FUND

Click here to learn more or to donate.

Guest Posts, healing

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

July 15, 2019

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 8^th 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

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

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

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…