Chronic Illness Memoir

A silent epidemic of chronic illnesses afflicts tens of millions of Americans: These are diseases that are poorly understood, frequently marginalized, and can go undiagnosed and unrecognized altogether. Renowned writer Meghan O’Rourke delivers a revelatory investigation into this elusive category of “invisible” illness that encompasses autoimmune diseases, post-treatment Lyme disease syndrome, and now long COVID, synthesizing the personal and the universal to help all of us through this new frontier.

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.

After a number of years of being chronically ill with Lyme disease, Jenny Rush had a momentary realization that she was overlooking a lesson that was resulting in continued ill health. As she went into her last year of dealing with chronic illness at a physical level, Jenny shifted her primary focus from the illness itself to addressing the multitude of experiences that the illness was provoking.

Dr. Judy Mikovits is a modern-day Rosalind Franklin, a brilliant researcher shaking up the old boys' club of science with her groundbreaking discoveries. And like many women who have trespassed into the world of men, she uncovered decades-old secrets that many would prefer to stay buried.

A riveting and candid account of a young journalist's awakening to a life of chronic illness, weaving together her personal story with reporting to shed light on how Americans live with long-term diagnoses today.

Marian Schembari was thirty-four years old when she learned she was autistic. By then, she’d spent decades hiding her tics and shutting down in public, wondering why she couldn’t just act like everyone else. Therapists told her she had Tourette’s syndrome, obsessive-compulsive disorder, sensory processing disorder, social anxiety, and recurrent depression. They prescribed breathing techniques and gratitude journaling. Nothing helped. It wasn’t until years later that she finally learned the truth: she wasn’t weird or deficient or moody or sensitive or broken. She was autistic.

On July 22, 2009, a special meeting was held with 24 leading scientists at the National Institutes of Health to discuss early findings that a newly discovered retrovirus was linked to chronic fatigue syndrome (CFS), prostate cancer, lymphoma, and eventually neurodevelopmental disorders in children. When Dr. Judy Mikovits finished her presentation the room was silent for a moment, then one of the scientists said, "Oh my God!" The resulting investigation would be like no other in science.

Diagnosed with a disease that can't be reversed? Learn how to keep living life to the fullest. Have you received a terminal or chronic diagnosis? Can you ever find joy, peace, or fulfillment in these challenging conditions? The answer is a resounding yes. When author Jarem Sawatsky was diagnosed with Huntington's Disease, he found there were no guides for those living with incurable illness. He quit his job as a professor and devoted his life to exploring the possibilities of living with chronic conditions. Now he's bringing his findings and insights to you.

When Amy B. Scher was struck with undiagnosed late-stage, chronic Lyme disease, the best physicians in America labeled her condition incurable and potentially terminal. Deteriorating rapidly, she went on a search to save her own life - from the top experts in Los Angeles and the world-renowned Mayo Clinic in Minneapolis to a state-of-the-art hospital in Chicago. After exhausting all of her options in the US, she discovered a possible cure - but it was highly experimental, available only in India, and had as much of a probability of killing her as it did of curing her.

In the fall of 1995, Dr. Saray Stancic was diagnosed with multiple sclerosis. By 2003, she walked regularly with a cane, had given up virtually all unnecessary physical activity, and was on numerous medications, all with horrible side effects. After stumbling upon some studies that linked MS outcomes to diet and lifestyle, Dr. Stancic undertook a radically different approach to managing her illness.

At the age of 27, Whitney Dafoe was forced to give up his life as a photographer who traveled the world. Bit by bit a mysterious illness stole away the pieces of his life: First, it took the strength of his legs, then his voice, and his ability to eat. The Puzzle Solver follows several years in which he desperately sought answers. Whitney's father, Ron Davis, PhD, a world-class geneticist at Stanford University whose legendary research helped crack the code of DNA, suddenly changed the course of his career in a race against time to cure his son's debilitating condition.

Backbone is a life-fulfilling message about managing chronic pain and living a life of purpose. For two decades, Karen Duffy, New York Times bestselling author, former MTV VJ, Revlon model, and actress, has managed to live an enriching life despite living in a state of constant pain. In this powerful, inspirational, funny, and important manual for surviving pain, Duffy draws on her experience as a patient advocate, trained recreational therapist, and hospice chaplain to illuminate gratifying methods people can use to cope with chronic pain.

In this inspiring memoir, Emily Falcon chronicles her lifelong journey with a congenital cardiac condition. In 1982, at seven weeks old, she had a heart attack that destroyed 40 percent of the left side of her heart. This was her entry into a world of multiple cardiac procedures, surgeries, hospitalizations, and a later diagnosis of glaucoma. Balancing these serious conditions defined her life.

Julie fully expected to be breathing at the end of the trip - but driving into Death Valley felt like giving up, surrendering. She'd spent years battling a mysterious illness so extreme that she often couldn't turn over in her bed. The top specialists in the world were powerless to help, and research on her disease, chronic fatigue syndrome, was at a near standstill. Having exhausted the plausible ideas, Julie turned to an implausible one. Going against both her instincts and her training, she followed the advice of strangers she'd met on the Internet.

One day, on her way to a date, Isabella Huffington gets hit by a bike. What begins as a concussion with a diagnosed recovery time of seven-to-ten days becomes more than two years of debilitating pain with no apparent end and a string of unhelpful doctor and specialist visits. In the wreckage, jobs are canceled. Leases are broken. There is no second date. What’s left is Isabella, her body, and her pain. Because the source of her pain cannot be located within the body, she is told over and over that her pain is psychosomatic. And Isabella believes it, over and over.

John Lynch was a promising athlete, but at age 11 was struck by a crippling illness. He was diagnosed with juvenile arthritis (JA), a disease that affects 300,000 children, making them unable to live full-functioning, pain-free lives. John continued to seek new treatments, but not until age 53 was he given the “miracle drug” that enabled him to sustain a 30-year legal practice. During that time, he dedicated his life to helping others who suffered from JA and became a much-honored advocate for easing their distress.

Brita grew up a competitive athlete, full of happiness and excitement for life. There wasn’t much that would take her out of a game as she constantly pushed her body to the limits. When she was unable to compete due to unknown and undiagnosed illness, she entered a world that was unfamiliar, and began to sink into a darkness she could never have imagined.

Allie Cashel has suffered from chronic Lyme disease for 16 years - but much of the medical community refuses to recognize her symptoms as the result of infectious disease. In Suffering the Silence: Chronic Lyme Disease in an Age of Denial, Cashel paints a living portrait of what is often called post-treatment Lyme syndrome, featuring the stories of chronic Lyme patients from around the world and their struggle for recognition and treatment.

Transformative, enlightening and inspiring - a compelling and candid story of life with constant pain. Irish broadcaster and producer Andrea Hayes is well known to the Irish public for her positive, friendly and down-to-earth persona on television and radio. Hidden behind her smile, though, is Andrea's battle with constant chronic pain. After over 20 years of unanswered questions, misdiagnosis, failed procedures and despair, she was diagnosed with a rare neurological disorder, Chiari Malformation 1.