The Etiquette of Illness: What to Say When You Can't Find the Words

by Susan P. Halpern

What should I say when I hear that my friend has cancer? How can I help but not get in the way? How do I let my loved ones know what I need?
The Etiquette of Illness is a wise, encouraging, and essential guide to navigating the complex terrain of illness. This collection of anecdotes and insights will help those who feel awkward and unsure about responding to a friend, colleague, or relative who is suffering. The book is also for people who are ill and want to engage with their loved ones effectively. We read about a range of people who are dealing with chronic illness, doctor-patient communications, and end-of-life issues-and who are striving to find their way with awareness and compassion.
Drawing on her years of counseling people with serious illness, as well as her own experiences with cancer, Susan Halpern presents an insightful book of the utmost relevance for patients, their caregivers, and their family and friends - a group which will, at some point, include all of us.
Susan P. Halpern is a social worker and psychotherapist. She is the founder of the New York Cancer Help Program and a staff associate at the Commonweal Cancer Help Program. She lives with her husband, near their children and grandchildren in Berkeley, California. This is her first book.
The Etiquette of Illness is a finalist for the Books for a Better Life award.
The Etiquette of Illness is an An Amazon "Editor's Pick" for Best Book of the Year (2004).

Genres: Nonfiction, Health, Self Help, Psychology, Medical, Book Club, Medicine

256 pages, Hardcover

First published January 1, 2004

About the author

Susan Halpern has been a social worker and psychotherapist for more than thirty years. Her first book, The Etiquette of Illness: What to Say When You Cant Find the Words, continues to be an important go-to manual for difficult times. Now in Finding the Words, Halpern offers principles and practical suggestions for those moments in relationships when one want to be kind but also must discuss a sensitive matter. She explains how to communicate with care in order to strengthen and increase our loving connections by speaking from the heart, stating intentions, and using deep listening while enabling navigation of difficult encounters.

Finding the Words, drawn from Halperns years of experience as psychotherapist, wife, and mother, suggests possible, scripted solutions and positive outcomes for a wide range of situations: a partner who needs to talk about the irritations of joint living, parents of an adult child who requires unexpected financial support, grandparents who dont know how to intervene, siblings who disagree about politics or religion, and couples in times of crisis, illness, affairs, and divorce. Presenting life situations along with the words that can be used to cope with them, Halpern offers honesty with a great deal of vitality and wisdom.

Reading Finding the Words is like taking out an insurance policy on the most precious of our relationships. It will carry you through times of crisis and enable you to rebuild the relationships that are the foundation of your life, often making them stronger and better than before. Rachel Naomi Remen, MD"

Reviews

[Elyse Walters · Rating 5 out of 5]

Update:

This is not a book about Cancer!
This is not a book about treatments!
This book is useful in be speaking appropriately to a person who is sick.
This book is for a person who 'is' sick to support 'asking' for what they need from others.
This book has great little examples of things not to say -not to do -
what do do -when to do -
This book has several stories for readers to connect with -think about -and relate to.

I give this book as a gift 'with' a couple of other books (as a package) when looking for gifts for those who are sick.



As another Goodreads member, (Hikerdee), has posted ---She also first heard of this book when she read "The End of Your Life Book Club" (A FANTASTIC-FANTASTIC BOOK).....by Will Schwalbe.

When I read the 2,000 +++ reviews on Amazon about 'THIS' book, "The Etiquette of Illness", with an average of 5 stars, I knew I not only needed to read it-own it--but also call our local "Center For Spiritual Living" book store and tell them to order 'tons' of copies for 'their' book store. (I knew they did not carry this book). They've ordered it!

This is a book which makes a difference! (for people who ARE sick ---and for people who have friends and family members who have an illness)

Last year, *two* friends had Cancer of the pancreas. (both are now doing well).

This year (within the last few weeks) ---*two* friends have told me they each have Cancer. Patty has bone Cancer.
I know her from taking workshops together at 'The Center for Spiritual Living"


Ofrit (a close friend), from Israel, has Breast Cancer ---which as come back from last year. I will be going through the long journey with her during her 4 months of Chemo. (plus twice a week we will walk together).

I'm at the age (60) where I feel its my responsibility to read this book. If I had not read this book 'before'....the time sure has come!

[Camie · Rating 3 out of 5]

3.5 stars. Because I have worked as a registered nurse and worked with lots of very ill people , I didn't feel like this book provided me with too much new information although I 'm sure many people will find it very helpful. It has many stories with great examples of how to best deal with different people and the circumstances of their different needs during illness. Because I have a chronic illness I found the chapter pertaining to it most interesting , having experienced in my case that most people simply ignore the fact that I am ill. I understand that many people just indeed do not know what to say or how to help. My favorite line in the book was on page 3." The simple phrase , I don't know what to say , can be the catalyst, and everything can flow from there ." I think this is something that could be helpful in many situations not just with those who are ill , but anyone who we wish to help in time of need , or even just reconnect with , or apologize to. How many times have we thought of someone and let that moment go by because " we don't know what to say . " Overall a good read.

[Julie Suzanne · Rating 4 out of 5]

It seemed that this was a book about what to say, what not to say, and how to say it when it was mentioned several times in The End of Your Life Book Club. Dealing with a spouse who is living with and treating a terminal illness, I was eager to see what Halpern recommends. I don't want to be saying the wrong things!

The book ended up being much better than that. A collection of anecdotes provide wisdom on multiple aspects of illness, from being a friend not knowing what to say or how to help to how doctors and patients should communicate with each other, I found many nuggets of useful information. My book is highlighted, and I shared many vignettes and ideas with my husband. Really, it just helps us to talk to other people who have been down this road, and in this book I found such people sharing their advice and experiences.

Readers WILL find some ideas for things to say, ways to help, things not to do, but there is a lot more to sift through to find those types of lists. For someone up to their ears in illness and crisis, it was worth wading through all of that. I recommend that at least one person in a family dealing with chronic or terminal illness read this, and share the important/relevant/useful information with the rest.

[Cagne · Rating 3 out of 5]

Somebody told me books like this are possibly a waste of time, but there is no end to how awkward I can feel. Overall it's a collection of single episodes, experiences, arranged by themes, to give you a bit of an idea of human interaction when one of the people is sick. Starting from the idea of prepping myself, I was surprised upon reading the parts from the point of view of the person with an illness, but they are equally useful.

Things I found interesting/useful:
-the warnings against trying to help too much, against making the receiver feel more uncomfortable with their condition.
-the importance of exposure of kids to death.
-dealing with people crying, specially the list of the appropriate/unappropriate things to say.

In the end, the book might not reveal to you anything you don't already assume or know, but it's still a needed immersion into the description of an experience, to get your bearings and feel less out of place in... hurt.

It's also a beautiful looking book. Size, cover, text... The note about the font, Adobe Caslon, made me take a step into e-readers and fonts.

[Lici · Rating 4 out of 5]

This is a nice book. Each chapter addresses a unique issue within the topic of illness. It is written not only for those who are well and are wondering how to approach someone with illness but also for those who are ill and not sure how to deal with others around them. There are no grand revelations or rules given in this book. She uses story after story of people in these circumstances to nudge the reader into seeing how life looks through the lens of illness (and that it is different for everyone.) I would recommend this book to anyone who is dealing with illness or death for the first time or having anxiety about what to say or do for a friend facing illness or death. It's a generous and gentle approach for overcoming your shortcomings and being the most compassionate person you can be for the people you care about.

[Bdalton · Rating 4 out of 5]

I read about this book in The End of Your Life Book Club by Will Schwalbe. There is a tremendous need for a book that addresses how to best support people with serious illnesses. In addition to providing valuable phrases (the "what to say when you can't find the words" of the title), Susan Halpern provides the stories of many caregivers and people dealing with a variety of illnesses. These stories may provide comfort and confidence to those seeking the words to ask for what they need.

Halpern does not provide a succinct rules of etiquette. Instead, advice is found throughout the book. Here is a small list of the do's and don'ts found in the book:

1. "It is tempting with illness, to quickly pass on what we know. But it's important to check carefully each time to learn whether the person with the diagnosis wants it known. Why do we violate the privacy of others so freely with illness? .... it is not our place to relieve our discomfort by intruding on someone else's privacy." Allowing people to share their own story with whom they want when they are ready preserves dignity. If someone was raped or assaulted, would people share that story so freely? Or, would they be protective of the attacked individual's privacy during a difficult time? The same ethical considerations apply.
2. "In the arena of helping, it is important to gauge your giving. ...I am a strong advocate for doing something when you hear a friend is ill, I would add that it is important to keep your assistance in line with what's possible for you and respectful of your sick friend's ability and desire to care for himself or herself, as well as congruent with your relationship."
3. "Family and friends, out of their own desire to fix, cure, and be helpful, often give advice...This directives arise from the best of intentions, but they are not respectful of the needs of the diagnosed person."
4. "To ask, "How did you get this?" is not appropriate. ...There are few of us who know what caused our cancer or chronic illnesses. Whatever we did, millions of other people do without getting sick."
5. "Let the wishes of the person who is ill be the guide, not your agenda. Over time, a person who is ill has changing needs and the ability to help changes. From time to time, ask the question, "What can I do?" again."

Halpern's basic advice is to be honest, kind, caring, and respectful of the ill person's wishes. If you or someone you know if not behaving in a manner that is in keeping with these principles, then you are behaving in hurtful manner to someone who is already struggling. If you are sharing information about a persons illness without their consent and asking others hide this revelation from the sick person, than you are asking others to join you in treating the ill individual disrespectfully and in a manner that will foster distrust. If you are the person receiving the information, you can always tell the "sharer" that you will let the person know that the "sharer" has told you about the illness. In that way, you need not participate in gossip or a request that compromises your integrity. Halpern says that if you are worried that you have made a mistake, you can always try again.

One out of every two Americans will have a chronic or life-threatening illness in their life. Learning how to ask others to treat us when our turn comes, is incredibly important. Improving our ability to respond politely and compassionately is important both professionally and personally. Everyone can benefit from reading The Etiquette of Illness: What to Say When You Can't Find the Words.

[Mary · Rating 4 out of 5]

A wonderful read for caregivers, hospice workers, and people with chronic/terminal illness. As a caregiver, I found all of the chapters worthwhile. However, I would recommend specific chapters - talking to children, death and dying, what to say, etc for specific people. Some clients will want/need to read the whole book, others would be helped with specific chapters. Still others may want to read the book over a period of months or years.

Having read this book over the weekend, I found myself using it with 4 clients today. Wow! This text encouraged me to have frank conversations about chronic illness and death/dying with several clients.

I think that the most important thesis from this book is to take the risk to say what is in your heart. Susan Halpern encourages us to act or speak if you have the inclination. Whether it is reaching out with a card, word, or action - she reminds us to be our best (and bravest) selves and reach toward our friends and relatives.

Thank you Susan - for an easily readble text that takes the terror, uncertainty, discomfort, and fear out of difficult conversations and gives the reader the courage (and some prompts) to speak to those who are ill among us.

[Shirley Freeman]

A friend lent me this book after it was recommended in "The End of Your Life Book Club" by Will Schwalbe. I plan to get a copy as a reference. The author has survived lymphoma and has interviewed many patients, former patients and family and caregivers to find out best practices for responding to people who are ill - chronically, terminally or temporarily. There are some specific suggestions for things to say and do and things Not to say and do but most of the advice is more situational. Some people want to be asked about their illness, some people don't, some change their minds depending on various parameters. The key seems to be to use common sense, forgive yourself and others, check in with the person who is ill and simply ask, "do you want me to ask how you are feeling today?" Our responses should be in proportion to the already established relationship - i.e. different etiquette for your best friend vs. an acquaintance. Most of us need a dose of common sense in times of stress - this book will help.

[Dee Renee Chesnut · Rating 4 out of 5]

The Etiquette of Illness was recommended to me when I read The End of Your Life Book Club. It also had the recommendation of Dawn, a www.goodreads.com reviewer who recommends it to all readers of a certain age.
I knew I needed to read this book because I tend to give too much advice that begins with the phrase, "What you ought to do..." or I avoid people with illness or people who are grieving. I have been taught avoidance by the best, and it is high time I learned better ways. I still found myself arguing with the book when the author's suggestions are not something I felt I could do.
The book gets 4 stars for discussing the topics in its 7 chapters.

[Krista Stevens · Rating 3 out of 5]

This edition was published in 2004, there is a more current one and I am curious how it has been updated. With today's social media, I think the book would be very different. Email is barely mentioned.

Because I am already been well-acquainted with both dying and death, this book did not offer me any fresh perspectives. However, for those who are uncomfortable with their own and other's illnesses and pending deaths, this might be a great book. Lots of short anecdotes, though a little too saccharine for my liking. The advice of what to say, how to say things, what not to say, how to help, how to tell children are clear and concise.

[Jeannette Hartman · Rating 3 out of 5]

This is a helpful, handy book for those times when someone you care about is facing a serious diagnosis, a difficult chronic condition or a terminal condition. Author Susan P. Halpern, a psychotherapist who has led or founded a number of cancer support groups and has herself been treated for lymphoma, is clear that there's no rote prescription that can cover all circumstanced. Her many anecdotes demonstrate a variety of approaches, some that worked and some that didn't. Ultimately, this book shows that it is better to reach out than not and that we have more options than we might realize to support someone who is ill.

[Tiffany · Rating 5 out of 5]

Excellent book on how to provide support to anyone with chronic illness. The author had cancer herself, which gives the book more authenticity for me.

[Annette Reynolds · Rating 4 out of 5]

This is a well-written, easy-to-read book on what to do to help yourself and people you know/love in the face of severe illness or imminent death.

Written in the first person using the author's own experiences with her cancer diagnosis, she also adds many other stories from other people who have gone through it all and what made them feel better, what helped, what didn't help when it came to friends wanting to do the right thing.

The book is a good guide for anyone - sick or not - because the author tells ways to ask for help as well as how to ask HOW to help.

The author's style is compassionate and kind, and the book doesn't read like a how-to manual.

My only complaint: the book is poorly formatted (lines aren't justified, making the book look jumbled and messy), and there are quite a few typos or missing punctuation marks throughout.

[Cyndie Courtney · Rating 5 out of 5]

What do you say to someone you care about who is dealing with illness, disfigurement, or the possibility of death? I'm sure I'm not alone in not knowing what to say or how to handle the situation in a way that is compassionate and caring. What do you say? Is it more polite to say something or not say something? This book gets at the heart of these challenges and gives specific tips but also general advice about how to continue to show needed love and caring while being respectful of the other person's needs. Fantastic. Should be required reading for every human being. Great insights for doctors as well.

[Rosemary · Rating 3 out of 5]

I have intended to read this book as it came into my consciousness over the years. I finally got it out from the library. If you are now, or ever think you might be, dealing with loss or death in your life or in a friends' lif, or a family members' life, this is a wonderful resource teaching how to be in such times. What questions to ask. How to hold open the ambiguity. Letting the person who is ill or dying decide what particular conversation makes sense. Whether it's a deep and soulful accounting, or a trashy discussion of the latest tv drama. I am glad I read it. I hope I am a better friend/family mamb/confidant/confessor because of this book.

[Karen · Rating 2 out of 5]

I thought this book sounded wonderful but I was disappointed after reading it. It's an anthology of many many stories told to the writer by cancer patients while she was in cancer treatment herself. While it's somewhat interesting to read all of these personal stories, I was actually hoping for some general guidance about talking with cancer patients. What I took away, after 200 pages, is to ask them if they want to talk about it. I was hoping for better, stronger guidance.

[Laura Siegel · Rating 5 out of 5]

I read this book over about a six-month period-not because it is slow but because it is one to savor. It is divided into short sections and I enjoyed reading a bit each day. The book deals with people who are ill, have disabilities or are caregivers. It covers how to communicate, ask for what you want and don't want, how to respect each persons individual needs. The author herself has dealt with lymphoma. I found it very helpful in navigating all kinds of personal situations.

[Jc · Rating 5 out of 5]

This book does exactly what it sets out to do. I couldn't ask for more. I think that it is necessary for a book of this sort that is built on such personal experience to be flawed in its presentation because people are flawed. I was happy to read of the many errors and triumphs the real people become involved on. I recommend this book to anyone who is dealing with illness and feels even a little befuddled by the whole process.

[Cara Hinton · Rating 4 out of 5]

Very good reminder, this book. The bottom line, is that nothing is really out of line when you are ill or you're caring for someone who is ill. Use your gut and be kind....shouldn't we do that every day anyway? If you're close to someone ill, or a caregiver, or both, this book can be a gentle reminder of how to help without intruding.....and remember everyone is different, even you.

[Kecia · Rating 2 out of 5]

I understand that everyone is different and everyone will approach a serious illness differently. I know that. Maybe it's just me but when I see the word etiquette I think about which fork to use, you know basic rules of society. That's what I wanted from this book but didn't get. It has nice little one or two paragraph stories about people coping with illness but no etiquette rules.

[Lisa · Rating 2 out of 5]

This book makes you think about how to react to people with illnesses. It is not a how to. It has real examples of people. Each person wants something different. Basically it teaches you to be think before we speak.

[Crystal · Rating 4 out of 5]

There were a number of errors that should have been caught by a proofreader. In spite of those I found this book extremely insightful and definitely worth the read.

[Lynne Reeves Griffin · Rating 5 out of 5]

For those who have ever wondered what to say to someone braving a life-threatening or chronic illness.

[Catherine · Rating 5 out of 5]

It was just what I needed. Lots of short examples from the real lives of patients, their caregivers, and their loved ones.

[Fabian Ruiz · Rating 4 out of 5]

In true Social Worker fashion, Halpern guides the reader through pretty much everything you can expect from this topic. I say Social Worker fashion since Halpern is there for 'you' to address a myriad of topics, I mean you can really just flip through the book if you're in a chaotic emotional state and have Halpern provide the space for you to cry. But even reading through everything is beautiful, I mean really as Halpern says in the introduction, Halpern's wisdom through her experience is something that people should know: How do you find the right words to say? How can you be there for a child when a parent, or you are dying? How do you die? Great stuff.

I say 'you' only because this book is written for just about everyone that death effects, which as Halpern says are all just people: Loved ones, doctors, the people going through whatever life throws them, I mean it's really for everyone. Well okay, not exactly everyone, more for the general public. Knowing that Halpern was a social worker and psychologist I wasn't sure if I was approaching a textbook or non-fiction book. It is very much the latter. Not a complete let down though, I mean there is definitely a guide here of dialogue, and that is a wonderrrful gift

[Ann · Rating 4 out of 5]

I would have given it a 3.5 if possible. I know I need more lessons in just shutting up and being there, in letting someone else take the lead, and in showing up when it's awkward. This book encourages those approaches and reinforces the fact that we can't fix it when someone is sick or hurting. Because the author was a cancer survivor herself, it was helpful to hear her experiences as well as those of people she had counseled. I would have appreciated either a little summary at the end of each chapter or a comprehensive list -- "10 Useful Things" or something like that at the end. My major takeaway was to regard my friend as my friend, not "my cancer-suffering friend," and to ask "Do you want to talk about how you feel?" Sometimes she says No, and we talk about other things. And that's good.

[Susan · Rating 4 out of 5]

Ms Halpern brings the perspectives of a psychotherapist and of a person living with cancer to this thoughtful and compassionate book about serious illness and death. There are chapters on how to: helpfully respond to a friend with a serious illness, talk to children about death and illness in their family, communicate about chronic illness, effectively talk with doctors, and say goodbye. The format makes it easy for a reader to read just the chapters on topic(s) of interest to them. The author and the many people she has spoken to provide numerous practical and thoughtful ideas on communicating for a useful and accessible book for those living with a serious illness and their family and friends.

Recommended by Will Schwalbe in The End of Your Life Book Club

[Wendy Jackson · Rating 4 out of 5]

I read this as it was mentioned and highly recommended in the Schwalbe book I just read (The End of Life Book Club), and it sounded like it would have some useful advice. This it had in abundance, divided into chapters focused on different scenarios - e.g., basic 'finding the words' advice, acts of kindness, talking to children, talking to people with chronic illness, end of life, etc. With the advice came many useful vignettes/stories showing the many ways these situations arise and the variety of ways to deal with them (and also advice on what NOT to do). The chapters are a bit discursive, but I think this was effective because at no point did I feel like it was lecture or anything like that.

[Ellie C · Rating 5 out of 5]

While I am not dying, I do struggle with chronic conditions and over the years I have found that talking about my health feels taboo with most of the people in my life. Reading this helped me re enter my compassion for others as they struggle to find the words and the ways to be present, as I also struggle to find the ways and words to share. I desperately wish everyone had the chance to read this book.

[Patti K · Rating 3 out of 5]

A 2014 work that is part memoir, part grief work advice for those
dealing with a serious illness or dying and those who care for them.
It is very commonsense, smart information on how to better treat
patients with more compassionate action and speech. It was engaging
and an poignant account also of the author's experience with cancer
and how she was both a patient as well as a therapist. Recommend.