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The Lady's Handbook for Her Mysterious Illness
Cover of The Lady's Handbook for Her Mysterious Illness
The Lady's Handbook for Her Mysterious Illness
A Memoir
The darkly funny memoir of Sarah Ramey's years-long battle with a mysterious illness that doctors thought was all in her head—but wasn't. A revelation and an inspiration for millions of women whose legitimate health complaints are ignored.
In her harrowing, defiant, and unforgettable memoir, Sarah Ramey recounts the decade-long saga of how a seemingly minor illness in her senior year of college turned into a prolonged and elusive condition that destroyed her health but that doctors couldn't diagnose or treat. Worse, as they failed to cure her, they hinted that her devastating symptoms were psychological.
The Lady's Handbook for Her Mysterious Illness is a memoir with a mission, to help the millions of (mostly) women who suffer from unnamed or misunderstood conditions: autoimmune illnesses like fibromyalgia and chronic fatigue syndrome, chronic Lyme disease, chronic pain, and many more. Ramey's pursuit of a diagnosis and cure for her own mysterious illness becomes a page-turning medical mystery that reveals a new understanding of today's chronic illnesses as ecological in nature, driven by modern changes to the basic foundations of health, from the quality of our sleep, diet, and social connection to the state of our microbiomes. Her book will open eyes, change lives, and ultimately change medicine.
The darkly funny memoir of Sarah Ramey's years-long battle with a mysterious illness that doctors thought was all in her head—but wasn't. A revelation and an inspiration for millions of women whose legitimate health complaints are ignored.
In her harrowing, defiant, and unforgettable memoir, Sarah Ramey recounts the decade-long saga of how a seemingly minor illness in her senior year of college turned into a prolonged and elusive condition that destroyed her health but that doctors couldn't diagnose or treat. Worse, as they failed to cure her, they hinted that her devastating symptoms were psychological.
The Lady's Handbook for Her Mysterious Illness is a memoir with a mission, to help the millions of (mostly) women who suffer from unnamed or misunderstood conditions: autoimmune illnesses like fibromyalgia and chronic fatigue syndrome, chronic Lyme disease, chronic pain, and many more. Ramey's pursuit of a diagnosis and cure for her own mysterious illness becomes a page-turning medical mystery that reveals a new understanding of today's chronic illnesses as ecological in nature, driven by modern changes to the basic foundations of health, from the quality of our sleep, diet, and social connection to the state of our microbiomes. Her book will open eyes, change lives, and ultimately change medicine.
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  • From the book 1

    Dear Reader,

    There may exist a graceful and elegant way to begin one's gynecologic and colorectal memoir, but it never does spring to mind.

    Let us start then with a story. We can travel back to where it all began, and for a moment leave the particulars behind. That sounds much nicer—lovely even—considering it all began so many years ago with a cool, luxuriant swim in Walden Pond.

    ~

    I remember it well. The heat was heavy, I was a summer student at Harvard with no air-conditioning, and Walden beckoned for the reasons it always will. Though I suppose the busloads of tourists beached on the imported sand should have sounded some instinctive alarm when I arrived, they didn't. I walked right on past and made my way to the side of the pond where the water was still and the snorkelers out of sight.

    I remember walking into the water. I remember floating on my back. I remember the coolness and the peace and the poetry of the place, and I remember feeling like I couldn't ask for anything more.

    The next day in the emergency room, I had quite forgotten all of that.

    A urinary tract infection, known as a UTI, is a very painful but easily treatable infection of the urethra. Most people describe it as "peeing broken glass," and I would have to agree with most people.

    But my ER doctors patted me on the back as they ordered up the standard antibiotics and I bounded off to the pharmacy, clutching my prescription, counting the minutes in the twenty-four hours they told me it would take to go away.

    Fifty-six hours later, I was back in the emergency room. It had not gone away.

    In fact, it did not go away for six months. "How strange," the college physician said as he took my history. I had never been sexually active, which made things particularly challenging, both diagnostically and emotionally. I was a senior in college, and it was my time. I even had the right person picked out.

    But the UTI stayed. We joked and called it my PUTI, or permanent UTI, and I laughed along with the rest. But in private, in the bathroom, I was profoundly unamused.

    ~

    This prologue is typical of women like me. A simple and innocuous medical event—often with a gyno or gastro tilt—that should have resolved simply, but didn't. She thinks it is just another one of life's ups and downs, when in fact Up is about to become a distant memory.

    There is a secret society of sorts that no one—not even the members—has heard of. We don't look alike, we don't dress alike, and we're from all over. There is no secret handshake, no meeting place, no cipher.

    We are the women with mysterious illnesses, and we are everywhere.

    ~

    When I went home for Christmas just outside of Washington, D.C., my parents—who are both top-notch physicians—made an appointment for me to see Washington's preeminent, top-notch urologist.

    Dr. Damaskus said I seemed like a nice, normal young woman who would probably like to get back to the business of being able to pee and have sex freely, and he saw no reason why he couldn't make that happen. He determined I no longer had an active infection—and then proposed a procedure, to be done right there, that day, in the office. As he described it, he would insert a small instrument into the urethra, rip it, and this would solve the problem.

    I frowned.

    But Dr. Damaskus assured me it was the only option, should I want a normal life again—the gentle ripping, he explained, was more of a light stretching of the tissue, and it would interrupt the muscle spasm and break the cycle of pain. He handed me a paper...
About the Author-
  • SARAH RAMEY is a writer and musician (known as Wolf Larsen) living in Tucson, Arizona. She graduated from Bowdoin College in 2003, received an MFA in creative nonfiction writing from Columbia in 2007, and worked on President Obama's 2008 campaign.
Reviews-
  • Publisher's Weekly

    Starred review from January 27, 2020
    In this illuminating debut memoir, musician Ramey offers an account of a mysterious illness that plagued her for more than a decade, beginning when she was in college in the early 2000s. Ramey recounts years struggling with excruciating pain, at times being unable to rise from bed. She pursued multiple medical treatments, but her pain persisted; when she turned to alternative approaches such as acupuncture and positive thinking, she found some relief, but also what she felt to be a New Age tendency to blame the victim. Though this medical saga is disturbing in the many miscalculations her doctors made, Ramey’s hilarious and upbeat sense of humor lightens even the direst of circumstances (a surgeon who performed the wrong surgery on her is dubbed Dr. Oops, and others merit such glib monikers as Dr. Vulva, Dr. Paxil, and Dr. Bowels). As Ramey relentlessly researched her own ailment, she learned that millions of women with such conditions as chronic fatigue, fibromyalgia, chronic Lyme disease, and other illnesses had also been ignored, mistreated, or belittled by conventional medicine. Ramey was eventually diagnosed with complex regional pain syndrome, and here she argues for more compassion among doctors and better treatment, and highlights reasons why some research has trouble securing funding (vaginal diseases, for example, are “too unpalatable for any awareness campaign, too unsexy to start a blog”). Ramey’s uncanny grit and fortitude will deeply inspire the multitudes facing similar issues.

  • Kirkus

    February 1, 2020
    A memoir that explores the idea that women with chronic illnesses need to rally for appropriate medical care. Making her book debut, Ramey, a writer and musician (known as Wolf Larsen), recounts, with captivating zest, a sorry tale of suffering from a cluster of symptoms that defied diagnosis. "I thought I was the strangest medical case on the East Coast," she writes, only to discover many others like herself. She was "a woman with a mysterious illness," a WOMI, chronically exhausted, aching, "likely in possession of at least one autoimmune disease," and likely to go from physician to physician in search of understanding. The daughter of physicians, Ramey began her quest for help believing unquestioningly in "Magical Pillthink," the notion "that if something is wrong, there is always a quick fix." She visited countless specialists and was treated with a host of medications that sometimes temporarily relieved symptoms, but more often not. She experienced "extremely bad--and often explicitly abusive--medical care," including botched surgeries. The author began to research her condition on her own, making some startling discoveries: the rise of autoimmune diseases in the last 30 years; the significance of the intestinal microbiome to digestive health and fatigue, aching, and "brain fog"; the role of antigens in producing an overactive immune response; physical and emotional traumas that can trigger WOMI symptoms; and microglia, tiny immune cells that protect the brain and nervous system that can become inflamed in response to a variety of stressors. Repeatedly prescribed antidepressants from frustrated doctors, Ramey indicts the medical establishment for its "contempt for women, and for the feminine," and recommends the new approach of functional medicine, which holds that "diet, lifestyle, and attitude are the cornerstones of health" and incorporates "testing, treating, and stabilizing" the four systems involved in "modern chronic illnesses: " the gut, liver, immune system, and endocrine system. Finally, her condition improved through common-sense changes: "Sleep, movement, a nontoxic environment, and a well-nourished psyche," Ramey concludes, are the basic needs for recovery. Impassioned testimony of a fight for health.

    COPYRIGHT(2020) Kirkus Reviews, ALL RIGHTS RESERVED.

  • Library Journal

    March 1, 2020

    Blending medical writing and memoir, journalist Ramey's first book presents snapshots of her life navigating chronic pain, searching for a name for her condition, and struggling to be understood by physicians. Ramey recounts years of embarrassment and shame, experiencing aches, fatigue, and brain fog, living in near isolation as friends drifted away. Similar to Maya Dusenbery in Doing Harm, Ramey relates how women are more likely to be misdiagnosed and mistreated by doctors and to live with misunderstood conditions, especially autoimmune diseases. Interweaving clinical research with personal stories, the book follows Ramey as she moves from doctor to doctor, surgeon to surgeon, undergoing invasive tests and examinations in a decades-long pursuit of a diagnosis of fibromyalgia or ME/CFS. This is not always easy reading, and it shouldn't be--Ramey reiterates that the U.S. health care system is not designed with women in mind. She concludes with personal health advice. VERDICT Though dense at times, this work is among the few about understudied chronic conditions that primarily affect women, and the little attention they receive. For those living with invisible illnesses who have been told they don't look sick, and fans of the podcasts This Is Not What I Ordered and No End In Sight.--Stephanie Sendaula, Library Journal

    Copyright 2020 Library Journal, LLC Used with permission.

  • Booklist

    Starred review from February 15, 2020
    Ramey's induction into becoming what she has dubbed a WOMI, a Woman with a Mysterious Illness, began when she was in college and a swim in Walden Pond led to a lingering urinary tract infection. It was treated with a horrific, botched procedure, which led to another infection, which led to Ramey being dosed with powerful antibiotics. Rather than that being the end of her ordeal, this kicked off a 17-year nightmare in which doctors and modern medicine failed Ramey again and again. Her quest to get to the root of undefined, oft-dismissed conditions like chronic fatigue syndrome and fibromyalgia, which plague women more often than men, led her on a veritable journey to the underworld as doctors doubted her, or worse, exacerbated her condition to the point where she became a complete invalid. In her agony, Ramey deduced that the problem went far beyond women being disbelieved; it stemmed from humanity's rejection of the feminine as valid. Ramey finally found the solution for managing her condition in functional medicine, a more holistic approach involving diet, exercise, and stress-reduction, as well as medication. A visceral, scathing, erudite read that digs deep into how modern medicine continues to fail women and what can be done about it.(Reprinted with permission of Booklist, copyright 2020, American Library Association.)

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