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Our healthcare system is broken. But it doesn’t have to break you. This practical, realistic guide is designed to help women fight medical bias and neglect in order to get the care they need—and deserve. For women, the possibility of experiencing medical gaslighting—having a health care provider dismiss or ignore their concerns without considering appropriate testing or creating a treatment plan—has always been a very real and present danger, with consequences ranging from self-doubt and emotional stress to delayed diagnosis and death. And being a woman of color, transgender, or disabled only compounds the risk. Today, more women are aware of medical gaslighting than ever—but awareness isn’t enough. In Medical Gaslighting, you’ll equip yourself with the tools you need to be fully heard at every step of the process, including: Mastering the ability to request, revise, and read your electronic medical records so you and your medical team are on the same page. Responding effectively when you recognize the signs, language, and scenarios associated with medical gaslighting Give yourself a fighting chance against common medical bias by being mindful of how you present yourself as a patient. With expert advice and stories from women across the medical spectrum who fought medical gaslighting and lived to tell their stories, patient advocate (and rare disease patient), Ilana Jacqueline provides a combat guide for increasing your confidence—and success—when advocating for your health. You might have to get naked in the exam room, but you don’t have to walk in unarmed. Medical Gaslighting is your guide to taking control of your healthcare.
Microaggressions in Medicine introduces a novel account of microaggressions and applies it in medical contexts. Guided by diverse patient testimonies and case studies, it focuses on harms experienced by patients marginalized on the basis of race, gender, sexual orientation, body size, and disability. It makes a compelling case that the harms of microaggressions are anything but micro and argues that healthcare professionals have a moral obligation to prevent them. By proving practical strategies for healthcare professionals to reduce microaggressions in their practices, Microaggressions in Medicine will make a positive difference in the lives of marginalized patients as they interact with healthcare professionals. All patients deserve high quality, patient-centered care, but healthcare professionals must change their practices in order to achieve such equity.
Editor of the award-winning site Feministing.com, Maya Dusenbery brings together scientific and sociological research, interviews with doctors and researchers, and personal stories from women across the country to provide the first comprehensive, accessible look at how sexism in medicine harms women today. In Doing Harm, Dusenbery explores the deep, systemic problems that underlie women’s experiences of feeling dismissed by the medical system. Women have been discharged from the emergency room mid-heart attack with a prescription for anti-anxiety meds, while others with autoimmune diseases have been labeled “chronic complainers” for years before being properly diagnosed. Women with endometriosis have been told they are just overreacting to “normal” menstrual cramps, while still others have “contested” illnesses like chronic fatigue syndrome and fibromyalgia that, dogged by psychosomatic suspicions, have yet to be fully accepted as “real” diseases by the whole of the profession. An eye-opening read for patients and health care providers alike, Doing Harm shows how women suffer because the medical community knows relatively less about their diseases and bodies and too often doesn’t trust their reports of their symptoms. The research community has neglected conditions that disproportionately affect women and paid little attention to biological differences between the sexes in everything from drug metabolism to the disease factors—even the symptoms of a heart attack. Meanwhile, a long history of viewing women as especially prone to “hysteria” reverberates to the present day, leaving women battling against a stereotype that they’re hypochondriacs whose ailments are likely to be “all in their heads.” Offering a clear-eyed explanation of the root causes of this insidious and entrenched bias and laying out its sometimes catastrophic consequences, Doing Harm is a rallying wake-up call that will change the way we look at health care for women.
Apert Syndrome is a rare genetic condition characterized by the fusion of certain bones in the skull, hands, and feet, leading to a range of physical and psychological challenges. While significant medical advancements have improved the quality of life for individuals with this syndrome, the psychological impact often remains underexplored. This book aims to bridge that gap by providing a comprehensive understanding of Apert Syndrome and the essential psychological support that can be offered through Cognitive Behavioral Therapy (CBT). As a psychologist dedicated to helping individuals navigate the complexities of genetic disorders, I have witnessed firsthand the profound effects that both the diagnosis and the associated challenges can have on mental health. Families and individuals face not only the physical implications of Apert Syndrome but also the emotional burdens that come with it—ranging from anxiety and trauma to issues of self-esteem and identity. In this book, we will explore the biological and genetic underpinnings of Apert Syndrome, delving into how these factors intersect with psychological well-being. We will discuss trauma, coping mechanisms, and the essential principles of CBT, along with practical tools and techniques designed to support mental health in the context of genetic illness. The aim is to provide a personalized therapeutic approach that empowers individuals to manage their condition while fostering resilience and emotional growth. Each chapter is structured to build upon the previous one, beginning with a foundational understanding of Apert Syndrome and moving towards actionable CBT strategies. Readers will find valuable insights not only for themselves but also for caregivers, family members, and mental health professionals who wish to offer informed support. This journey is not merely about managing a condition; it’s about enhancing the quality of life, cultivating self-acceptance, and fostering a deeper understanding of the psychological aspects of living with Apert Syndrome. It is my hope that this book serves as a resource of knowledge, support, and inspiration for anyone touched by this syndrome. Together, we can pave the way for a brighter future, one where psychological support is recognized as a vital component of holistic care for individuals with Apert Syndrome.
Turner Syndrome is a genetic condition that affects females, characterized by the complete or partial absence of one of the X chromosomes. This syndrome presents a unique set of challenges that can significantly impact not only physical health but also emotional well-being and mental health. As the understanding of Turner Syndrome continues to evolve, so too does the need for effective psychological support tailored to those affected. This book, Psychological Support by Cognitive Behavioral Therapy for Turner Syndrome, aims to bridge the gap between genetic understanding and psychological support. Through the lens of Cognitive Behavioral Therapy (CBT), we explore the emotional complexities that accompany Turner Syndrome and provide practical tools and strategies for coping with its challenges. In the following chapters, we delve into various aspects of Turner Syndrome, including its biological, genetic, and psychological components. By integrating insights from genetics, epigenetics, and behavioral health, this book presents a holistic approach to understanding and managing the emotional impact of Turner Syndrome. Cognitive Behavioral Therapy is a well-established psychological intervention that has proven effective in addressing a variety of mental health issues, including anxiety, depression, and trauma. Throughout this book, we discuss the principles and techniques of CBT, emphasizing their application in the context of Turner Syndrome. The strategies outlined here are designed to empower individuals by fostering resilience, promoting self-awareness, and encouraging healthy coping mechanisms. It is important to recognize that the journey with Turner Syndrome is deeply personal and can vary widely among individuals. This book is not intended to be a definitive guide, but rather a supportive resource to assist those navigating the psychological landscape of this condition. Whether you are a person with Turner Syndrome, a caregiver, or a mental health professional, I hope you find valuable insights and practical tools within these pages. I would like to express my gratitude to all the individuals and families who shared their stories and experiences, which have informed and enriched this work. Your courage and resilience are an inspiration to all. As we embark on this journey together, may we foster a deeper understanding of Turner Syndrome and its psychological implications, ultimately paving the way for better mental health support for those who need it most.
The journey of living with Pyruvate Dehydrogenase Deficiency (PDD) is complex and often isolating. Those affected by this rare, hereditary metabolic disorder face unique challenges, not only medically but emotionally and psychologically. As awareness grows about the impact of chronic and genetic conditions on mental health, it becomes clear that support must extend beyond physical treatment to address the holistic needs of patients and their families. This book seeks to bridge that gap by providing a comprehensive guide to managing PDD through the lens of Cognitive Behavioral Therapy (CBT). Drawing from the latest research in genetics, epigenetics, and behavioral therapy, this book aims to equip readers with knowledge and practical tools for coping with the daily challenges of PDD. The first sections introduce the fundamental biological concepts relevant to understanding PDD, including genetics, hereditary diseases, and congenital conditions. Understanding these aspects can empower individuals, helping them feel more informed and involved in their health journey. The second half of this book focuses on actionable CBT strategies designed to support mental well-being. CBT is a well-established therapeutic approach that has shown significant benefits in managing emotional distress, anxiety, and depression—common challenges among those with chronic illnesses. Through personalized therapeutic approaches and practical tools, this book offers readers a range of coping strategies to manage the psychological impact of PDD. From learning to navigate medical bureaucracy to addressing concerns about social relationships and personal identity, these strategies are intended to foster resilience, self-compassion, and an adaptive mindset. This book also includes guidance for clinicians and caregivers. Understanding the psychological needs of individuals with PDD can help caregivers and healthcare providers offer more empathetic and effective support. The included CBT tools have been selected for their applicability to common struggles faced by individuals with genetic conditions, such as grief, fear of stigma, and managing relationships in the face of chronic health concerns. Psychological Support by Cognitive Behavioral Therapy for Pyruvate Dehydrogenase Deficiency was inspired by the strength and resilience of individuals living with genetic conditions. It is our hope that this book serves as a source of comfort, empowerment, and practical help to anyone affected by PDD. Whether you are a patient, a family member, or a healthcare provider, this resource is dedicated to improving the quality of life for all those touched by this condition.
Werdnig-Hoffmann disease, a severe form of spinal muscular atrophy (SMA), presents not only profound physical challenges but also significant psychological and emotional burdens for those diagnosed and their families. This book, Psychological Support by Cognitive Behavioral Therapy for Werdnig-Hoffmann Disease, seeks to address these psychological dimensions by offering a comprehensive framework for understanding the emotional toll of the disease and providing evidence-based therapeutic strategies to improve quality of life. The journey through a life with Werdnig-Hoffmann disease involves not only managing a progressive and often debilitating physical condition but also navigating the intricate psychological landscape that comes with it. Individuals with this disease, their caregivers, and healthcare providers are often faced with feelings of grief, helplessness, anxiety, and frustration. Coping with such emotions is essential for enhancing the quality of life and ensuring better overall well-being. Cognitive Behavioral Therapy (CBT) has proven to be an effective tool in managing emotional difficulties in chronic illness. CBT focuses on understanding the connection between thoughts, feelings, and behaviors and offers practical tools to alter negative thought patterns, improve emotional regulation, and promote healthier coping strategies. The therapy is particularly beneficial in the context of genetic disorders like Werdnig-Hoffmann disease, where individuals may face unique challenges such as identity struggles, anxiety about genetic transmission, and the emotional impact of medical decisions. This book is intended to provide a solid foundation for clinicians, caregivers, and patients themselves to explore the intersection of mental health and genetic disease. It combines an in-depth understanding of Werdnig-Hoffmann disease with insights into genetics, epigenetics, and hereditary conditions. Through this, I aim to offer not just a therapeutic guide but a pathway to emotional resilience in the face of genetic illness. In addition to providing theoretical and clinical perspectives, this work delves into the application of CBT, addressing common issues faced by patients such as chronic pain, societal pressures, feelings of isolation, and the emotional toll on caregivers. By focusing on practical tools and therapeutic strategies, I hope to empower those affected by Werdnig-Hoffmann disease to manage their emotions, foster resilience, and improve their mental health alongside physical treatment. The integration of personalized therapeutic approaches is emphasized throughout the book, as each individual’s experience with this disease is unique. It is my belief that through this personalized care and the application of CBT techniques, individuals can better navigate the emotional challenges of Werdnig-Hoffmann disease, ultimately leading to improved psychological well-being and quality of life. I would like to dedicate this book to the individuals and families affected by Werdnig-Hoffmann disease and other similar conditions. Your courage, perseverance, and resilience in the face of adversity are the inspiration behind this work. It is my hope that this book serves as a supportive guide in your journey, helping to alleviate some of the emotional burdens and fostering a deeper sense of peace and empowerment.
Tay-Sachs disease is a devastating genetic disorder that profoundly affects individuals, families, and communities. Characterized by the progressive degeneration of nerve cells, it often leads to severe physical and cognitive impairments, ultimately resulting in premature death. For those diagnosed with Tay-Sachs, as well as their loved ones, the emotional and psychological toll can be as challenging as the physical manifestations of the disease. This book aims to bridge the gap between medical understanding and psychological support, offering a comprehensive guide to utilizing Cognitive Behavioral Therapy (CBT) as a tool for managing the emotional and mental health challenges associated with Tay-Sachs disease. While advancements in genetics and medical science continue to expand our knowledge of this condition, it is equally essential to address the psychological aspects that arise throughout the genetic journey. In the chapters that follow, we will explore a range of topics, from the biological underpinnings of Tay-Sachs and its genetic implications to the various emotional struggles experienced by individuals and families. We will delve into the principles of CBT, providing practical tools and strategies to help those affected by Tay-Sachs navigate their emotional landscapes. By integrating concepts from behavioral genetics, personalized therapeutic approaches, and effective pain management techniques, this book seeks to offer a holistic view of the psychological support available to those living with this condition. I have drawn on my experience in psychology and my passion for supporting individuals facing chronic illness to craft this resource. My hope is that readers will find solace, guidance, and empowerment through these pages. It is my belief that while we cannot change the course of Tay-Sachs disease, we can certainly change how we respond to it—both in our minds and in our hearts. I invite you to embark on this journey with me, as we explore the intersection of psychology, genetics, and compassion. Together, let us foster resilience, enhance well-being, and illuminate a path of understanding for those impacted by Tay-Sachs disease.
How survivors of the Covid-19 pandemic battling long-term disabling conditions are fighting for recognition and research—and helping to transform healthcare for many overlooked diseases. To the world’s public health authorities, Covid-19 would be either a deadly disease for some or a simple respiratory illness for most, its symptoms clearing up in just a matter of weeks. But then tens of millions around the world got sick and stayed sick. With scientists and doctors caught off guard, these Long Covid patients often found solace only with one another, organizing support groups across oceans and continents while ill in bed. In The Long Haul, CNN journalist Ryan Prior weaves his own life, the stories of activist patients, and the latest science into a captivating tale of regular people crying out for care that actually works. What Covid “long haulers” found was that their new illness was not so new. In fact, it resembled other post-viral syndromes: difficult to treat and neglected by science. In riveting and accessible prose, Prior follows an innovative band of patients who took matters into their own hands and researched the disease themselves, thereby flipping the script and illustrating a new paradigm for research. In these unprecedented times, the CDC and the WHO came to them. As Covid continues to circulate, its long-term effects could grow as well, weighing on the healthcare system for decades to come. But, as Prior shows, getting Long Covid treatments right could help revolutionize care for all complex and chronic illnesses.
Klinefelter Syndrome (KS) is one of the most common genetic conditions, yet it remains a relatively underrecognized aspect of health and wellness. Characterized by the presence of an extra X chromosome in males, this syndrome can lead to a variety of physical, psychological, and emotional challenges that impact individuals and their families. The complexities of Klinefelter Syndrome extend far beyond its biological implications, as those affected often navigate a landscape marked by unique struggles related to identity, self-esteem, and interpersonal relationships. In this book, we aim to bridge the gap between genetic understanding and psychological support by emphasizing the vital role of Cognitive Behavioral Therapy (CBT) in the management and treatment of Klinefelter Syndrome. Our goal is to provide a comprehensive guide that integrates scientific insights from genetics and psychology, offering practical tools and strategies for both individuals with KS and their healthcare providers. The journey through Klinefelter Syndrome can often feel isolating, laden with societal pressures and misconceptions. Many individuals with KS grapple with feelings of inadequacy, trauma, and confusion regarding their identities and futures. By employing the principles of CBT, we can help facilitate a shift in perspective, empowering individuals to reframe their experiences, develop resilience, and embrace their unique identities. Throughout the chapters, we will explore a wide range of topics, from the biological underpinnings of Klinefelter Syndrome to the psychological tools that can foster healing and growth. Each section is designed to build upon the last, weaving together insights from genetics, trauma, mental health, and therapeutic practices. We delve into the specific challenges faced by those with KS, offering targeted strategies to cope with pain, anxiety, stigma, and the emotional toll of living with a genetic condition. It is my hope that this book serves as a resource not only for individuals affected by Klinefelter Syndrome but also for family members, healthcare professionals, and educators seeking to better understand the complexities of this condition. By fostering a supportive and informed community, we can enhance the quality of life for those with KS, helping them navigate their unique journeys with confidence and hope. Thank you for joining me on this important exploration of Klinefelter Syndrome and the profound impact of psychological support through Cognitive Behavioral Therapy. Together, we can work towards a future where individuals with KS are empowered to lead fulfilling lives, unencumbered by stigma or limitation.