I am so proud of my friend and fellow warrior for the way she chose to respond to this incident. Nobody should ever feel bullied for being strong enough to share their story and experience with the world in hopes of raising awareness or finding answers.
This article covers one of the best resources available for Undiagnosed Patients. There’s a common misconception that patients who are working or have a spouse/partner that makes too much money cannot qualify for assistance to help pay for the costs of medical care but that’s actually not true. I’ve personally been recommending the Buy-In Programs for years now because it literally saved me from financial ruin in the process of searching for a diagnosis. Getting answers usually requires extensive medical testing, multiple specialty office visits, and different therapies or treatment – which can easily cost a small fortune, even if you have “good” insurance.
I thought I would share my thoughts on an amazingly good book I read recently called Living Well with Chronic Illness because it has a lot of really helpful information that I think anyone managing an undiagnosed or chronic condition can appreciate.
From the first page of the introduction throughout the rest of the book, author and chronic illness patient Joanna Charnas present an accurate portrayal of what it’s like to live with an undiagnosed or chronic condition in such a way that you feel hopeful for the future. I am a young woman who has spent more than 20 years feeling lost within the maze of the American healthcare system in an attempt to obtain a clinical diagnosis that could somehow explain the unrelenting and progressive constellation of symptoms I experienced since early childhood. So, I know all too well what it’s like to feel as though the only option left is to give up when doctors cannot give you the answer you are looking for. Although it’s a daunting task to find a balance between managing symptoms and having some semblance of a normal life, the book Living Well with Chronic Illness attempts to minimize the impact that chronic illness has on quality of life by refocusing efforts towards the elimination of biological, psychological, and social fatigue – all of which serve as poignant reminders of disability or infirmity. Through the use of both personal and professional examples that are drawn directly from Charnas’ own experiences, Living Well with Chronic Illness reads as though the author is sitting down right in front of you as she recounts her personal story of where she began and where she is today, along with all the lessons she had to learn along the way. So, grab a cup of coffee (or whatever beverage you enjoy) and prepare to be enlightened.
Each chapter represents a unique challenge of being sick and then advises the reader as to how to effectively cope with such adversities in order to regain control of their health and go on to live a much happier and more fulfilling existence in spite of declining vitality. Part I tackles the more emotional aspects of chronic illness by first acknowledging individual feelings (e.g., anxiety, fear, anger, hope) and then suggesting a variety of therapies that can help change negative attitudes into positive ones through humorous expression and general acceptance. Part II focuses on the special issues of undiagnosed or chronic illness while guiding readers through strategies for practical management. In fact, Part II also contains my absolute favorite chapter of the entire book entitled “Your Body Knows Best: Listen to It!” Part III concentrates on the more serious topics that unfortunately pop up in illness or disability, including the various laws governing the practice of medicine, patient rights or responsibilities, and the financial concerns of illness or disability. Finally, Part IV opens up about the spiritual considerations of those who are sick, such as the maintenance of faith and hope, while equivocally accommodating the personal or religious beliefs and values of readers, before closing with an important reminder of all the good things that come out of doing the harder things in life. In chronic illness, these are the gifts of empathy, strength, self-confidence, a sense of community, and the ability to grow or develop into a better, stronger version of our true self. Whether you are a newcomer, a veteran, a practitioner, or just somebody who wants to learn more about the realities of living with an invisible or chronic disease, I promise you will find some value within the pages of this book.
Joanna Charnas has been a social worker for almost thirty years. She is a licensed psychotherapist in two states with a specialty in group therapy, and has spent the last 20 years working with people with physical and mental illness. She’s a blogger on the Huffington Post and writes articles for an international health website. Living Well With Chronic Illness is Joanna’s first book.
To learn more about the author, please visit her website at https://joannacharnas.wordpress.com/about/
When you have a chronic or rare illness, your “job” title quickly changes over to “professional patient”. This article is poignant in pointing out the many deficits that modern society places on those with disabilities, while suggesting changes to the paradigms of both chronic illness and those receiving disability benefits.
Source: Being Disabled Is a Job
If you haven’t had the chance to read this post as of yet, I highly recommend checking it out. It really puts the feelings of what it’s like to live Undiagnosed into words.