The best books to help you keep on living with chronic illness

Who am I?

Like my main character, I’m a Norwegian writer with ties to the US, who grew up with various chronic illnesses. I discovered the reason for much of my trouble when I was diagnosed with endometriosis. Isolated and in pain, I have always turned to books. I craved seeing my life reflected. Since Please Read This Leaflet Carefully came out, I’ve heard from many readers. I hope that it can help people who haven’t seen themselves in art before. This list addresses the needs of a life with chronic illness and pain: guidance, darkness, humor, comfort, and poetry. I hope these books will help you as much as they did me. 


I wrote...

Please Read This Leaflet Carefully: Keep This Leaflet. You May Need to Read It Again.

By Karen Havelin,

Book cover of Please Read This Leaflet Carefully: Keep This Leaflet. You May Need to Read It Again.

What is my book about?

Please Read This Leaflet Carefully is a life told in reverse and a subversion of what we expect from stories of illness. Having been diagnosed with endometriosis in her twenties, we follow Laura Fjellstad in her struggle to live a normal life across New York, Paris, and Oslo, fueled by her belief that to survive her chronic illness she must be completely self-reliant.

Moving backwards through time from 2016 to 1995, we meet Laura’s younger selves: her healthier selves. Laura as a daughter, a figure skater, a lover, and a mother. To be devoured intensely in one sitting, Please Read This Leaflet Carefully is a remarkable debut novel with bracing emotional insights and piercing descriptions of pain that linger in one’s mind long after the last page. 

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The books I picked & why

Book cover of Angels in America: A Gay Fantasia on National Themes

Karen Havelin Why did I love this book?

Angels in America was the first place I saw a fuller depiction of life with serious illness, and it blew my mind. Prior, who has AIDS, is arguably the main character. The focus doesn’t cut away from him the second things get very bad. Instead, we stay and see him through. I believe deeply in the power of seeing one’s darkest moments honestly reflected in art. I first discovered Angels through the amazing TV series with Al Pacino and Meryl Streep and it broke my heart into a thousand pieces. When I later read the plays, I was amazed at how funny they are. The joke density is very high. The bleakness and pathos combined with incisive humor are what make these amazing works of art some of my all-time favorites. 

By Tony Kushner,

Why should I read it?

1 author picked Angels in America as one of their favorite books, and they share why you should read it.

What is this book about?

Winner of the Pulitzer Prize for Drama
Angels in America: A Gay Fantasia on National Themes includes Part One, Millennium Approaches and Part Two, Perestroika

“Glorious. A monumental, subversive, altogether remarkable masterwork…Details of specific catastrophes may have changed since this Reagan-era AIDS epic won the Pulitzer and the Tony, but the real cosmic and human obsessions—power, religion, sex, responsibility, the future of the world—are as perilous, yet as falling-down funny, as ever.” –Linda Winer, Newsday

"A vast, miraculous play... provocative, witty and deeply upsetting... a searching and radical rethinking of American political drama." - Frank Rich, New York Times

"A…


Book cover of How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers

Karen Havelin Why did I love this book?

How to Be Sick is a soothing and strengthening book that offers tools that are useful for any creature living a life with a human body and heart. It contains many Buddhist-inspired mindfulness techniques that I use daily, such as ways to adjust one’s thoughts and approach, ways to work with acceptance and grief, and ways to find pleasure and joy when they are hard to come by.

By Toni Bernhard,

Why should I read it?

1 author picked How to Be Sick as one of their favorite books, and they share why you should read it.

What is this book about?

A brand-new edition of the best-selling classic with added and updated practices.

In 2001, Toni Bernhard got sick and, to her and her partner’s bewilderment, stayed that way. As they faced the confusion, frustration, and despair of a life with sudden limitations—a life that was vastly different from the one they’d thought they’d have together—Toni had to learn how to be sick. In spite of her many physical and energetic restrictions (and sometimes, because of them), Toni learned how to live a life of equanimity, compassion, and joy. This book reminds us that our own inner freedom is limitless, regardless…


Book cover of Staying Alive: Real Poems for Unreal Times

Karen Havelin Why did I love this book?

This collection, published by Bloodaxe Books, categorizes poems loosely by theme and contains a treasure trove of the best poems to help you keep on living when life is too hard. There is a wide range of themes, as well as some uplifting poems that explore everything beautiful about being alive.

By Neil Astley,

Why should I read it?

1 author picked Staying Alive as one of their favorite books, and they share why you should read it.

What is this book about?

Staying Alive is an international anthology of 500 life-affirming poems fired by belief in the human and the spiritual at a time when much in the world feels unreal, inhuman and hollow. These are poems of great personal force connecting our aspirations with our humanity, helping us stay alive to the world and stay true to ourselves. Many people turn to poetry only at unreal times, whether for consolation in loss or affirmation in love, or when facing other extremes and anxieties. Staying Alive includes many of the great modern love poems and elegies, but it also shows the power…


Book cover of Lessons in Taxidermy: A Compendium of Safety and Danger

Karen Havelin Why did I love this book?

This is the first book where I read about experiences of childhood illness similar to my own. Reading it was both shocking and deeply cathartic in a way that felt almost dangerous. It is also a cold hard look at class, age, and intergenerational trauma in relation to health and healthcare in the US. It exists in its own category in my mind. All I can say is read it, just not on a bad pain day. 

By Bee Lavender,

Why should I read it?

1 author picked Lessons in Taxidermy as one of their favorite books, and they share why you should read it.

What is this book about?

Diagnosed with cancer at age twelve and perilously pregnant at eighteen, surviving surgeries and violent accidents: sometimes you can't believe Bee Lavender is still alive; sometimes you think nothing could kill her. Bee Lavender holds nothing back as she recounts her life spent in and out of hospitals and her subsequent dissociation from her own body and emotions. She struggles with health problems from birth, which are compounded by her surroundings, including frequent encounters with street fights, domestic violence and poverty. Her voice is as strong as the front she puts up for the multitude of doctors she sees, and…


Book cover of The Disability Studies Reader

Karen Havelin Why did I love this book?

I was absolutely stunned when I read "Unspeakable Conversations" by Harriet McBryde Johnson, one of the many brilliant pieces included in this reader. My edition is from 2010, but new and updated editions have come out since. It explores questions of interdependency and independence, gender, the body, sexuality, biases in science and medicine, and physical disabilities, and investigates issues around pain, mental disability, and invisible disabilities.

Becoming familiar with some disability theories has been invaluable to me. My capacity to read myself as disabled has grown and still fluctuates. To know that sharp minds have been working on this and that it isn’t only a private issue but a political and theoretical one, one that can be marked by joy and humor as well as grief, struggle, and hardship, is immensely helpful. 

By Lennard J. Davis,

Why should I read it?

1 author picked The Disability Studies Reader as one of their favorite books, and they share why you should read it.

What is this book about?

The fifth edition of The Disability Studies Reader addresses the post-identity theoretical landscape by emphasizing questions of interdependency and independence, the human-animal relationship, and issues around the construction or materiality of gender, the body, and sexuality. Selections explore the underlying biases of medical and scientific experiments and explode the binary of the sound and the diseased mind. The collection addresses physical disabilities, but as always investigates issues around pain, mental disability, and invisible disabilities as well. Featuring a new generation of scholars who are dealing with the most current issues, the fifth edition continues the Reader's tradition of remaining timely,…


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Unsettled

By Laurie Woodford,

Book cover of Unsettled

Laurie Woodford

New book alert!

What is my book about?

At the age of forty-nine, Laurie Woodford rents out her house, packs her belongings into two suitcases, and leaves her life in upstate New York to relocate to Seoul, South Korea. What begins as an opportunity to teach college English in Asia evolves into a nomadic adventure.

Laurie spoon-feeds orphans in Ethiopia, performs 108 bows at a Buddhist mountain temple, walks shelter dogs in Peru, milks goats in Fuerteventura, and gets lost in Mexico, all the while navigating dating at midlife.

After four years of traveling, Laurie’s return “home” becomes an unexpected adventure of its own when she ends up in Arkansas and meets Bruce, a bird-loving, bearded Quaker, and then struggles to reconcile her need for freedom with her longing to feel settled.

Unsettled

By Laurie Woodford,

What is this book about?

At the age of forty-nine, driven by an urgent restlessness, Laurie Woodford rents out her house, packs her belongings into two suitcases, and relocates to Asia. What begins as an opportunity to teach college English overseas, evolves into a nomadic adventure as Laurie works and volunteers in South Korea, Ethiopia, Peru, Spain, and Mexico. After four years of traveling, Laurie's return "home" to the U.S. becomes an unexpected adventure of its own when she ends up in Arkansas and meets Bruce, a bird-loving, bearded Quaker, who challenges her to reconcile her life of fierce independence with her longing to feel…


5 book lists we think you will like!

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