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If you live with a chronic illness or disability, there will likely be times when you just can’t find the words to adequately describe your experience. We live in a capable society, one that upholds healthy people as the standard of living. People with chronic illnesses often fall through the cracks of what is considered “normal.”
My favorite way to find solace in my condition is to talk to people who understand that we may never get better. During the COVID-19 pandemic, I have retreated to books written by authors with experiences similar to mine. When reading, the author’s disability does not matter to me. What matters is the shared experience of feeling thrown into a capable world and expected to cope with the difficulties that come with it. Some of my favorite readings on the illness experience are below. In them, I hope you find comfort, anger, companionship, and whatever else you need to navigate your life through the eyes of a sick or disabled person.
These books are also great to recommend to people in your life who just don’t get it. In no particular order… your future reading.
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1. Sick: A Memoir, by Porochista Khakpour
Sick, a memoir on late-stage Lyme disease, highlights feelings of frustration regarding the diagnosis. Porochista Khakpour describes the difficulties she faced in finding comfort, an appropriate name for her condition, and reduction in pain after becoming addicted to the very medication she was prescribed for treatment.
2. The Collected Schizophrenias: Essays, by Esmé Weijun Wang
The Collected Schizophrenias may be one of the best modern representations of where mental and physical illnesses meet. Battling a handful of diagnoses, including schizophrenia, Lyme disease, and PTSD, Esmé Weijun Wang presents her inner dialogue about health and the many misconceptions surrounding the diagnosis.
3. What Doesn’t Kill You: A Life with Chronic Illness—Lessons from a Body in Revolt, by Tessa Miller
In my experience, there is a significant lack of reading material on diagnosis at a young age. What Doesn’t Kill You is an inspiring exception to the rule. Tessa Miller beautifully describes the 20-something experience of being diagnosed with an incurable disease and coming to terms with the many years she still has left to fight her condition. To see also : Air travel was mixed on weekends and issues are expected to continue. After an illness, Miller’s life changed forever when he was diagnosed with Chron’s disease. By sharing her journey, she questions why we treat illness as a taboo subject while the statistics surrounding adults with chronic illness and disability continue to rise.
4. In the Kingdom of the Sick: A Social History of Chronic Illness in America, by Laurie Edwards
In the Kingdom of the Sick sheds light on a key question that many chronically ill people and online experts struggle with: How much information is too much to share? As diagnoses continue to grow in the United States, advocates are found on many platforms—from the news to social media. On the same subject : Bowman’s Travel Diary: It’s Not All Chaotic. Disease is something that can affect anyone at any time, so why do we hide it? Laurie Edwards explores how we need to continue the conversation about chronic illness to better educate everyone, including those who will one day join us.
5. Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties, by Laurie Edwards
Edwards has another important book on adjusting to an incurable disease at a young age. Many readers can relate to their current social group aging based on their health limitations. On the same subject : There are many reasons for climate denial, but science is the solution. It can seem impossible to find friends who understand and adapt, bosses who allow time off for doctor visits, and loved ones who help create a fruitful routine through pain, limitation, and illness. In Life Disrupted, Edwards helps readers achieve this difficult balance.
6. Disability Visibility: First-Person Stories from the Twenty-first Century, edited by Alice Wong
Edited by Alice Wong, this collection of essays is a perfect way to understand the different kinds of experiences you may know less about. Disability Visibility allows individual writers to share their experiences with illness and disability, as well as how it affects their everyday lives. If you’re not a big fan of reading, these essays will feel accessible and easy to digest due to their brevity and constant change in topic.
7. On Being Ill, by Virginia Woolf
If an entire book isn’t your thing, this 1930 essay by Virginia Woolf turns the subject of illness into some of the most important words you’ll ever read. On being sick, he wonders why, if we all get sick at some point in our lives, there is such a stigma around the subject. Almost a hundred years after its initial publication, it is frustrating to feel a sense of identification with the idea that illness is still repressed and judged as some kind of sin.
8. How to Be Sick, by Toni Bernhard
If you’re looking for a way to come to terms with your illness and move forward with mindfulness, look no further than How to Be Sick. Toni Bernhard describes a Buddhist approach to accepting any diagnosis. The book doesn’t focus on just one type of illness, so it can be related to readers who have a chronic diagnosis or just something new and daunting they’re experiencing. How to be sick is not about avoiding your illness or practicing mindfulness to forget about it, it is about finding a center of stability within your illness and inviting it to different parts of your being.
9. Girl In The Dark, by Anna Lyndsey
If there’s one book on this list that emphasizes how quickly one’s life can change, it’s Girl in the Dark. Anna Lyndsey began to develop a sensitivity to light throughout her body. Over time, it became so intense that she was forced to retreat into total darkness, where she chose to chronicle her journey. Lyndsey’s experience is unique, but she speaks of being forced to adjust to unwanted symptoms, even when everything else in her life seems to be going well.
10. The Invisible Kingdom: Reimagining Chronic Illness, by Meghan O’Rourke
Focusing on autoimmune diseases and invisible diseases, Meghan O’Rourke uses The Invisible Kingdom to metaphorically scream from the tops of mountains. While his title may suggest otherwise, O’Rourke lifts the veil off one of America’s quietest subjects: people who seem perfectly healthy but live their lives completely sick. In questioning why it’s so difficult to get answers and the necessary support, O’Rourke highlights minority populations, including people of color and women, who also fall into another minority group: the chronically ill.
►Related: Grilling with a disability is easy with these tools
►More: 10 books to celebrate disability pride throughout the year
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Sample Strategies Self-management is the ability to effectively manage your emotions, thoughts, and behaviors in a variety of ways. situations. This includes managing stress, delaying gratification, motivating yourself, and setting up and working. toward personal and academic goals.
How many chronic diseases are there?
While many diseases can be considered chronic, 13 of the top chronic conditions that represent a significant burden in terms of morbidity, mortality, and health care are: Cardiovascular disease.
What are the 5 chronic diseases? Chronic diseases, such as heart disease, cancer, diabetes, stroke, and arthritis, are the leading causes of disability and death in New York State and across the United States.
What are the 6 chronic diseases?
common chronic diseases
- heart disease.
- race.
- lung cancer.
- colorectal cancer.
- depression.
- type 2 diabetes.
- arthritis.
- osteoporosis.
What are the 7 chronic diseases?
Chronic diseases, such as cancer, diabetes, hypertension, stroke, heart disease, respiratory disease, arthritis, obesity, and oral disease, can lead to hospitalization, long-term disability, reduced quality of life and death [6,7].
How can I use self-management skills for living a healthy life?
Some of these tools include:
- physical activity.
- healthy nutrition.
- manage pain and fatigue.
- Managing stress.
- understanding of emotions.
- communication skills.
- work effectively with health professionals.
What is the goal of self management in patients who have a chronic illness?
With effective self-management, the patient can manage their condition and make the cognitive, behavioral, and emotional changes necessary to maintain a satisfactory quality of life.
What is the goal of supporting self-management? Self-care support is the help given to people with chronic illnesses that enables them to manage their health on a day-to-day basis. Self-care support can help and inspire people to learn more about their conditions and take an active role in their health care.
What is the most common self management problem for chronic conditions?
Self-management problem areas (SM problems) 2, with the most frequent areas being weight loss (88.8%), eating more fruits or vegetables (75.8%), reducing fat in the diet (72.6%) , increase physical activity (71.5%) , and high levels of health-related distress (63.7%).
What are the goals of chronic disease management?
The goals of chronic disease management are to minimize symptoms, improve quality of life, and prevent unnecessary hospitalizations.
How does chronic illness affect mental health?
People with chronic physical illnesses are twice as likely to experience anxiety or depression as their physically healthy counterparts, and for specific health conditions, the rate is even higher. Physically ill people can also develop post-traumatic stress disorder (PTSD).
What is chronic mental health illness? A condition that requires medical attention and/or restricts a person’s daily life and lasts at least one year is considered a chronic disease/illness. 1. The most common of these in the United States include, but are not limited to, heart disease, stroke, diabetes, and cancer.
How do mental illness and chronic disease relate?
People living with serious mental illness are at increased risk of experiencing a wide range of chronic physical conditions. By contrast, people living with chronic physical health conditions experience depression and anxiety at twice the rate of the general population.
How does illness affect you mentally?
Untreated mental illness can cause serious emotional, behavioral, and physical health problems. Complications that are sometimes associated with mental illness include: Unhappiness and decreased enjoyment of life. Family problems.
