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Guest Posts, Chronic Illness, chronic pain

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, Chronic Illness, pandemic

What Doesn’t Kill You Still Sucks: HIV & COVID-19

August 28, 2020
covid

By Martina Clark

The last time I went outside it was March. March 2020, I believe, but who actually knows. Time has become the intellectual equivalent of holding water in your hand.

Like most of us, I’m under ‘stay-at-home’ rules during this pandemic. I live in Brooklyn, NY which has had approximately the same number of cases of COVID-19–and twice as many deaths–as all of Canada.

Like too many of us, I’ve also been under quarantine. It is almost certain that I have contracted COVID-19, although I can’t confirm this with 100% certainty because it is nearly impossible to be tested for the virus. The only viable way to get a test is to go to a hospital. On the off chance I have some other illness with identical symptoms, the last place I want to go is to an Emergency Room filled with people who are already ill. I don’t want to expose myself further. I don’t want to get on public transportation to travel. And I certainly don’t want to add to the burden of overwhelmed health care workers just for a test.

I’m about three weeks into this journey and I count my blessings every day that I’ve had a ‘mild’ case which, from my experience, presented as such:

  1. Fatigue. Extreme fatigue. Early on in this global health crisis, I joked that my ‘quarantine adaptive gene’ was strong because I’m quite happy to stay home and am never bored. But being lazy is not the same as fatigue and this virus made it nearly impossible to get out of bed many days, and the smallest of tasks wore me out. I’m slowly getting back to normal, but I still need more sleep than usual.
  2. Body aches. Again, I’m not a super sporty person, but walking up and down a flight of stairs is normally not a challenge. With this virus, however, one flight of stairs–up or down, not even both directions–felt like I’d done a thousand squats, run a marathon, and been poked with needles all at the same time.
  3. Chest pain. This is the part that lingers but, mercifully, with lessening intensity. In the first week of illness, I felt as if I had claws inside my rib cage. I’ve had bronchitis and I’ve had shingles. This was more painful than both combined. Today, three weeks later, it only feels like a Shrek-sized creature is squeezing my chest. Tightly. It hurts more if I sit too long. It particularly hurts in the morning when I wake up. But it is better. Much better.
  4. Nausea. Motion sickness on steroids. I choose to believe that whatever creature was clawing inside my chest was also making sardine milkshakes for fun. The worst was waking up to the nausea, although going to sleep with it wasn’t much fun either. During the day, it would sometimes abate, but not for long. It also lingers but is much milder than before.
  5. Headaches. I thought I’d been spared the headaches, until I wasn’t. They hit me quickly and like a brick. I’ve only ever had one migraine, but this was reminiscent of that experience, although without the light-sensitivity. Thankfully, those were neither constant nor lingering.
  6. Sore throat. Similarly, I thought I’d missed this symptom, but it joined my COVID entourage in the third week. It is not unbearable, but it is unpleasant. But I can swallow and breathe so I count myself lucky.
  7. Dry cough. The least annoying and, luckily, the least severe. I’ve definitely had worse coughs in my life, but this remains worth noting, as it is a regular reminder that I’m still not over this virus which is still working its way through after three weeks.
  8. Fever. Apparently, I’m a bit cold blooded because my temperature never topped 99º.
  9. Loss of smell or taste. Never happened. The litter box still needs regular cleaning.
  10. Shortness of breath. I count every lucky star in the sky that I never experienced any shortness of breath. My breathing has been shallow, and still is, but I’ve never struggled for air. I am so very lucky.

But this is not my first virus rodeo. The real kicker in this story is that this year marks the fact that I’ve been living with HIV for half my life, 28 years to be exact. I sincerely believed I’d served my time with life-threatening viruses but, apparently, the universe thought otherwise. I followed the guidelines, socially distanced, washed my hands, sanitized surfaces, and used face coverings before they were cool, but I still got exposed.

Most likely I was at higher risk because I have HIV. On the other hand, I’m wondering if I managed to avoid a worse case because I already take antiretroviral medications for HIV. I don’t know, nobody does. My doctor said that they are designing trials to study COVID-19 in people with HIV so perhaps they’ll be able to, one day, find out. I will gladly volunteer to be studied, as I have with WIHS, a natural history study of women living with HIV for the past 25+ years. My nephew calls me a ‘living resource’ which makes me proud and gives my survival that much more purpose.

Last week my doctor told me I was cleared to go outside, like actually outdoors, but I haven’t yet. Each day I look out the window and think, maybe tomorrow. I have amazing neighbors who shop for me when needed.

I have an extraordinary crew of siblings and niblings who check on me, send fruit baskets and cards, and offer to do grocery runs on my behalf and then drop and dash, leaving the goods at my doorstep.

My partner, by chance, was away visiting family–and is now stuck in another state–so I have not had the added burden of worrying about putting him at risk during my quarantine. Thanks to FaceTime we’re connected several times a day so although I am alone physically, I am far from lonely. It may sound strange, but I am grateful he is not in New York right now to experience this catastrophic chaos or the incessant wailing of ambulance sirens.

Friends check on me, my doctor checks on me, family check on me, and my beautiful cat, Sangha, reminds me that she is still in charge and needs more snacks. She snuggles with me and provides feline contact. She’s a tiny warm body, but she still counts.

And, surprisingly, (or maybe not) I feel far less alone than I did when coping with my diagnosis for HIV. We don’t know much about COVID-19, but this pandemic has hit like a tsunami. The numbers are staggering and horrific, but I know I am–tragically–not alone. 

With HIV, however, I’d never seen another woman with HIV–that I knew of–and so I felt I was on my own. I wasn’t, but that was how it felt. Today we are building on the experience and knowledge borne from the response to HIV and AIDS. While it is a reminder that we didn’t act quickly enough in the 1980s and 1990s to that pandemic, it is, at the same time, gratifying to know that all of the work that has been done by activists and scientists, and others, has not been for naught.

I’m so blessed that my story continues to transition to a happy ending, yet so very sad not everyone else is as lucky. My heart goes out to all who have lost loved ones to COVID-19, as well as to HIV and AIDS and all of the other awful fatal causes. Stay home if you can. Stay safe as best you can and know that you are not alone.

Martina Clark teaches writing for CUNY, but previously worked for more than 20 years as an HIV educator for the United Nations system, notably for UNAIDS, UNICEF, and UN Peacekeeping. She holds a BA in International Relations and an MFA in Creative Writing and Literature. Martina lives in Brooklyn, NY, but will forever be a Californian.

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Guest Posts, Chronic Illness, parenting

Little Elephant

December 12, 2018
elephant

By Amy D. Lerner

You know the story of the blind men and the elephant? They’re trying to figure out what this creature is in front of them. Each of the men feels a different part of the elephant, the trunk, the foot, the tail, and describes the elephant based on only that one part. They each come up with wildly different ideas about what an elephant is, and not one of them sees the big picture, the whole elephant.

My elephant is only 3 feet tall and 35 pounds, yet this story is still true.

Like many people, I make up stories and make metaphorical leaps, from an elephant to my four-year-old daughter, without even thinking about it. My mind is a runaway steam engine—I can’t help thinking of that image—and metaphors are the coal.

“The way we think, what we experience, and what we do every day is very much a matter of metaphor,” write George Lakoff and Mark Johnson in Metaphors We Live By, the seminal book on thinking in metaphors that was published in 1980. We tend to speak and think in metaphors without being aware of it and without stopping to think about how our metaphors are guiding us, but they are, Lakoff and Johnson insist.

Studies have shown that by thinking about the story of the blind men touching the elephant, it’s as if I’m actually touching the wrinkled and rough skin of an elephant. In other words, metaphors are stored in the same part of the brain as the things they represent: the idea of kicking the habit stimulates the same motor area of the brain as kicking a ball does. Metaphors are deeply embedded in our minds, and they’re linked to the most basic human functions. Continue Reading…

Guest Posts, Binders, Chronic Illness

The Fine Lines of Twitching

July 11, 2016

*photo credit: Tiffany Lucero

By Rebecca Swanson

A grimace here. A grimace there. No one has to know. Lock yourself in a bathroom stall and twitch, take a deep breath and head back to class. I could hide it. Except when I couldn’t.

“What’s wrong with your face?” People asked, in real life, years before the anonymous cloak of internet avatars. Classmates. Friends. I knew these people.

“Nothing,” I said. “What’s wrong with yours?” (I didn’t say, as I held my cheeks steady and retreated again to the ladies’ room, second stall from the left).

They rushed out when I got home, a frenzy of tics, a wild, flapping flock of pigeons startled from a perch. But quieter. They lasted through bedtime and woke me in the night. Gasping, sometimes, when I held my breath over and over. Is that even a tic? My abdomen muscles shredded, despite being an athlete. Do people know that it often hurts? Continue Reading…

Guest Posts, Chronic Illness, Young Voices

Do You See What I See?

April 20, 2016
illness

Note from Jen Pastiloff, founder of The Manifest-Station. This is part of our Young Voices Series for Girl Power: You Are Enough. We are always looking for more writing from YOU! Make sure you follow us on instagram at @GirlPowerYouAreEnough and on Facebook here.

By Kristin George

You see a woman of twenty-five with curled hair and meticulously placed makeup. You see a woman with an assortment of dresses all vibrant in color. You see a woman with a smile lighting up her face. You see a woman who laughs freely and talks candidly. You see a woman who looks your definition of healthy.

You don’t see what I see. I see a woman nearly twenty-six whose body acts years beyond its age. I see a woman who wakes up every day with pain evident in her eyes. I see a woman who goes days, even weeks without ever stepping out of the house because the pain is too great and the effort is too tiresome. I see a woman who spends days in the hospital having procedures and tests. I see a woman who takes nearly thirty pills a day just to try and help her body function properly.

You see eyes lined with makeup. What you don’t see is that the makeup hides the pain in my eyes—the pain that I’m trying my best to hide.  You see vibrantly colored dresses. What you don’t see is my form underneath that fluctuates nearly every day with my difficulty to eat. You see a smile. What you don’t see is that underneath that smile lies anguish and pain. You see health because you can’t see underneath my outward appearance. What you don’t see is how hard my body has to work just to digest food or how hard it has to work just to walk around the house. Continue Reading…