How to Live Well with Chronic Pain and Illness

  More Praise for How to Live Well with Chronic Pain and Illness

  “There’s a difference between pain and suffering. For some, pain is almost constant, but how it affects us — how we respond to it — makes all the difference. Toni shows us that difference, and she shows us what it can mean for how we live: that our lives can still be joyful.”

  — David R. Loy, author of A New Buddhist Path

  “This book is an inside report from the often invisible community around us who suffer from chronic illness and pain. It is deeply human, refreshingly candid, and uncommonly wise.”

  — Christopher Germer, PhD, clinical instructor, Harvard Medical School

  “The overarching message for those with chronic illness — and for all the rest of us as well — is that self-compassion is the most reliable refuge. Toni has been chronically ill for a long time, but her illness has not affected her perfect pitch.”

  — Sylvia Boorstein, author of Happiness Is an Inside Job

  “The words between these covers will relieve so much pain in the world.”

  — Therese J. Borchard, author of Beyond Blue

  “Through Toni’s words you will find a wise friend to turn to during both the rough and the smoother times.”

  — Deb Shapiro, author of Your Body Speaks Your Mind

  “Everyone with chronic illness, and those who love them, should have this book on their shelf to refer to over and over.”

  — Dorothy Wall, author of Encounters with the Invisible

  “No other author I know has written as accurately and insightfully about living with chronic illness as Toni Bernhard.”

  — Alex Lickerman, MD, author of The Undefeated Mind

  “As a psychotherapist, I wish this book had been written years ago. This is an invaluable guide for anyone touched by these challenges.”

  — Arnie Kozak, author of Mindfulness A to Z

  “If you or someone close to you is coping with chronic difficulties, this book is not to be missed.”

  — Phillip Moffitt, author of Emotional Chaos to Clarity

  “Toni Bernhard shows how limitation can open onto limitlessness — how suffering can open onto well-being.”

  — Thomas Bien, author of Mindful Therapy

  “If you have chronic illness, this is the book to keep within arm’s reach at all times.”

  — Danea Horn, author of Chronic Resilience

  “This excellent guidebook is an absolute must-read for every person facing these difficult circumstances.”

  — James Baraz, author of Awakening Joy

  “Toni Bernhard shares her own powerful experience of how mindfulness practice can deeply support anyone with chronic illness.”

  — Sharon Salzberg, author of Real Happiness

  “Warm, stunningly comprehensive, wise, and practical.”

  — Carlin Flora, author of Friendfluence

  “Practical and inspiring teachings both for those who have chronic illness and for everyone who suffers and struggles in their lives.”

  — Mary Grace Orr, teacher at Spirit Rock Meditation Center

  “Written with generosity of spirit and mind, How to Live Well offers life-saving, soul-nourishing, helpful help. Each chapter provides practical techniques not only for surviving chronic illness, but for becoming a more compassionate person along the way.”

  — Joslyne Decker, author of Fight Like a Mother

  “Whether you’re navigating challenges with your partner, physician, or friends, dealing with rampant emotions, or simply learning to accept and value the life that you have, this is the book for you.”

  — Joy Selak, author of You Don’t LOOK Sick

  “Chock-full of practical wisdom that will bring light and direction to anyone lost in the darkness of chronic pain and illness.”

  — Susan Bauer-Wu, author of Leaves Falling Gently

  “Toni Bernhard speaks honestly and humbly, leading to a wonderfully balanced series of suggestions presented with compassion and a deep understanding of the complexities of living well while sick. I will recommend this book to friends, family members, students, therapists, and clients.”

  — Lizabeth Roemer, author of The Mindful Way through Anxiety

  “To read Toni Bernhard is to engage with a friend of uncommon wisdom. I can’t imagine anyone (even those who are well) who would not benefit from this splendid volume.”

  — Alida Brill, author of Dancing at the River’s Edge

  “This wise and profound book will help transform your experience into one of great compassion, equanimity, and joy.”

  — Kristin Neff, PhD, author of Self-Compassion

  “A superb and wise application of mindfulness practice during times of illness, the lessons of this book are for everyone, whether ill or not.”

  — Gil Fronsdal, guiding teacher of the Insight Meditation Center

  “This seminal book could truly be a life-saver.”

  — Diana Winston, director of Mindfulness Education at UCLA’s Mindful Awareness Research Center

  “Toni Bernhard never disappoints in her ability to share insightful knowledge with a dose of humor. Read this book and garner knowledge and strategies on how to live the best life possible.”

  — Lori Hartwell, president and founder of Renal Support Network

  “Sometimes when we’re sick, all we want is that flash of recognition — the look that says I know what it feels like to be tired, the touch that says I understand what it feels like to be in pain. Toni Bernhard gives us more; she teaches us how to provide this comfort to ourselves. Self-acceptance is the greatest healer.”

  — Susan Milstrey Wells, author of A Delicate Balance

  “Toni Bernhard’s wonderfully insightful guidance can help anyone live well. How To Live Well is a gift that offers ways to live fully and deeply with what each day brings.”

  — Oriah Mountain Dreamer, author of The Invitation

  “This guide lives up to its name. It goes way beyond highfalutin hand-waving and provides useable, time-tested guidance for how to live a full life within pain and difficulty.”

  — Barry Boyce, editor-in-chief of Mindful

  How to Live Well with Chronic Pain and Illness

  “IMMENSELY PRACTICAL AND INFUSED WITH WARMTH, WISDOM, AND UNFLINCHING HONESTY.”

  — Dr. Alice Boyes, author of The Anxiety Toolkit

  “LET TONI BERNHARD BE YOUR GUIDE IN THIS LIFE-CHANGING JOURNEY.”

  — Larry Dossey, MD, author of One Mind

  CHRONIC PAIN AND ILLNESS CREATE many challenges, from career crises and relationship issues to struggles with self-blame and isolation. Beloved author Toni Bernhard addresses these challenges and many more, using practical examples to illustrate how mindfulness, equanimity, and compassion can help readers make peace with a life turned upside down.

  “Drawing on her own awakening-through-illness, Toni Bernhard guides us in navigating the physical and emotional rough waters of chronic illness. You’ll feel accompanied, understood, and guided by the heart wisdom of a trustworthy friend.”

  — TARA BRACH, PHD, AUTHOR OF RADICAL ACCEPTANCE

  “A must-have guide for anyone suffering from chronic pain or illness.”

  — DR. GUY WINCH, AUTHOR OF EMOTIONAL FIRST AID

  TONI BERNHARD is the author of the award-winning How to Be Sick and How to Wake Up. Her blog, “Turning Straw Into Gold,” is hosted on the website of Psychology Today.

  For my children Jamal and Mara…

  Generous Kind-hearted Honest Dependable.

  You can count on me.

  I can count on you.

  You have made this a good life inde
ed.

  Table of Contents

  Introduction: Making Peace with a Life Upside Down

  I. Skills to Help with Each Day

  1.Educating Family and Friends about Chronic Pain and Illness

  2.Letting Go: A Not-To-Do List for the Chronically Ill

  3.Asking for Help Can Be Your Gift to Others

  4.Developing the Confidence to Say No

  5.When the “Want Monster” Whispers in Your Ear

  6.Complaining Is a Recipe for Suffering

  7.Dealing with Tough Choice after Tough Choice

  8.The Many Benefits of Patience

  9.Cultivating Kindness

  II. Mindfulness: Potent Medicine for Easing the Symptoms of Chronic Illness

  10.Mindfulness Can Ease Physical Suffering by Easing Mental Suffering

  11.Mindfulness Practices That Address Physical Discomfort

  12.Formal Mindfulness Meditation Can Help Your Mind Help Your Body

  III. Responding Wisely to Troubling Thoughts and Emotions

  13.Breaking Free from Stressful Thinking Patterns

  14.When the Blues Come Calling

  15.Surviving a Bad Mood with Grace

  16.Shedding the Burden of Embarrassment

  IV. Special Challenges

  17.Invisibility: When You Look Fine to Others

  18.When You and Those You Love Are in Conflict

  19.The Special Difficulties Faced by Young People Who Are Chronically Ill

  20.Maximizing Your Chances of Success at the Doctor’s Office

  21.Sick Upon Sick: Handling an Acute Illness While Chronically Ill

  22.The Pesky Issue of Sleep

  23.Longing for That Pre-Illness Life

  24.The Uncertainty of It All

  25.Taking Care of the Caregivers

  V. Isolation and Loneliness

  26.Quotations and Reflections on Loneliness

  27.Healing Loneliness through Mindfulness

  28.Coping with Isolation During Holidays and Other Gatherings

  VI. Enjoy the Life You Have

  29.Beware of “Good Old Days Syndrome”

  30.Why Not Me?

  31.Don’t Let Envy and Resentment Keep You from Enjoying the Life You Have

  32.Slow Down and Savor Life

  33.Appreciating the Wondrousness of the Human Body

  VII. For Family, Friends, Caregivers, and Anyone Concerned about Chronic Illness

  34.Setting the Record Straight about Chronic Illness

  35.What the Chronically Ill Hope Others Will Understand

  36.“Oh No!”: What the Chronically Ill Hope Others Won’t Say

  37.“Thank You!”: What the Chronically Ill Hope Others Will Say

  38.What’s in a Name? The Harm Caused by Mislabeling Medical Conditions

  39.Letting Go: A Not-To-Do List for Caregivers

  40.Lessons for the Healthy from the Land of the Sick

  VIII. Last but Not Least

  41.True Confessions

  42.My Heartfelt Wishes for the Chronically Ill

  Afterword

  Acknowledgments

  About the Author

  INTRODUCTION

  Making Peace with a Life Upside Down

  But do not ask me where I am going

  As I travel in this limitless world

  Where every step I take is my home.

  — ZEN MASTER DOGEN

  YOU’RE NOT SUPPOSED to fall ill on a trip to Paris. You’re supposed to fall in love — if not with that special someone, then with the city itself. Unfortunately, I fell ill. This was in May of 2001, and I’m still sick. A seemingly harmless viral infection compromised my immune system and turned into a chronic illness that keeps me mostly housebound and often bedbound. It felt as if my life had been turned upside down. I was supposed to be in the classroom; instead, I was in the bedroom. I was supposed to be active in my community; instead, I rarely left the house. I was supposed to be spending time with my newborn grandchild; instead, I rarely saw her.

  Many people think it’s somehow their fault when they become chronically ill. They see it as a personal failing on their part. We live in a culture that reinforces this view by bombarding us with messages about how, if we’d just eat this food or engage in that exercise, we need never worry about our health. For many years, I thought that the skillful response to my illness was to mount a militant battle against it. All I got for my efforts was intense mental suffering — on top of the physical suffering I was already experiencing.

  The pivotal moment for me came when I realized that, although I couldn’t force my body to get better, I could heal my mind. From that moment, I began the process of learning (to reference the title of my first book) “how to be sick,” by which I mean how to develop skills for living gracefully and purposefully despite the limitations imposed by chronic illness. (Please note: I’ll be using the terms chronic illness and chronically ill throughout the book; both terms include chronic pain.)

  None of us can escape disappointment and sorrow in life. They come with the territory. They’re part of the human condition, largely because we don’t control a good portion of what happens to us. If there’s no escaping our measure of disappointment and sorrow, then the path to peace and well-being must lie in learning to open our hearts and minds to embrace whatever life is serving up at the moment. This is a mindfulness practice — mindfulness infused with compassion for ourselves.

  Opening in this way is not easy, and I don’t always succeed. And yet when I’m able to be fully present for my experience, even if it’s unpleasant and even if it’s not what I’d hoped for, I feel at home in the world. I vividly remember the first moment when I accepted my life as it is — chronic illness included. I felt a huge burden lift. For the first time since I became sick, the conviction that I absolutely needed to recover my health in order to ever be happy again was absent.

  In the space created by that absence, I began writing about chronic illness. I write for those who are struggling with their health, for those who take care of them, and for those who wish to understand what life is like for the chronically ill. In a nutshell, it can feel as if all our cherished plans have been upended, leaving us with a life that is at once confusing and chaotic. For this reason, I refer to chronic illness as “a life upside down.”

  Mindfulness is the key to developing skills for living a rich and fulfilling life in the midst of this upheaval. Mindfulness doesn’t just refer to being aware of what’s going on around us and in our bodies; it includes paying attention to what’s going on in our minds. When we become aware of the mental and emotional challenges that accompany chronic illness, not only is it easier to adjust to and accept our new lives, but we’re much more likely to make skillful decisions and wise choices along the way.

  Mindfulness is usually defined as paying attention to our present-moment experience. But mindfulness is more than simply paying attention: it’s paying attention with care. In other words, our intention matters. Are we paying attention with the intention to ease suffering in ourselves and others, or are we passive and indifferent observers of life? Without a benevolent intention, mindfulness can become a heartless practice. Are we to watch a child run into the street and — instead of yelling “Stop!” — passively note, “Child running into the street”? Of course not. This is why mindfulness means caring attention.

  Caring attention paves the way for the sense of well-being that arises when we treat ourselves and others with kindness and compassion. Caring attention also paves the way for the arising of equanimity. No matter how frustrated and unhappy we feel at the moment, minds are flexible and can change. We can learn not to be lost in painful regrets about the lives we can no longer lead, nor to be overwhelmed with fear and worry about the future. We can move from being caught in relentless stress and anxiety about our health to a place of peace with our lives, however that life happens to be at the moment.

  This book covers a broad range of topics related to chronic illness and to the chro
nic array of challenges that life has in store for all of us. Inspired by nearly twenty-five years of Buddhist study and practice, here is my recipe for peace of mind:

  One dose stark reality. Our lives, and the people in them, are uncertain, unpredictable, and do not always conform to our desires or our liking; acknowledging and accepting this is the first step toward making peace with our circumstances.

  One dose practical skills. Learning to pay caring attention to our lives through mindfulness practice, cultivating kindness and compassion for ourselves as well as others, and resting in the peace of mind that comes with equanimity are skills that every one of us can learn, no matter how discouraged or unhappy we are at the moment.

  One dose humor. Humor is good medicine for the heart and the mind.

  May you find a place of peace even in the midst of your health struggles. May every step you take become your home.

  I. Skills to Help with Each Day

  1

  Educating Family and Friends about Chronic Pain and Illness

  The only way to make sense out of change is to plunge into it, move with it, and join the dance.

  — ALAN WATTS

  WHEN CHRONIC ILLNESS initially strikes, it feels like a crisis. Family and friends are scrambling to adjust to the many sudden and unexpected changes in your life. They may be confused about why you’re not recovering. Family members, in particular, may also be frustrated over their inability to make you better and may be worried — even scared — about what the future holds.

  As the months go by and the feeling of being in a crisis subsides, you may find it difficult to convey to family and friends what your day-to-day life is now like. Unless they’ve experienced it themselves, it’s difficult for people to fathom the debilitating effects — physical and mental — of unrelenting pain and illness. Usually, the only person who truly understands is a caregiver who sees you all day long. (I’ve watched many a friend give me a blank look when I share that I feel as if I’ve had the flu, without respite, since 2001.)

  I’ve learned that the burden is on me to make my medical condition visible to family and friends, especially because my chronic illness, as is often the case, is invisible. If I don’t make the effort to educate them, their expectations of me may be way out of line with what I can handle.