The Etiquette of Illness: What to Say When You Can’t Find the Words
Susan P. Halpern
“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.”
Rheumatoid Arthritis Guy finished reading this book last night. I think I am not the only person who has experienced having a close family member or friend seemingly disappear overnight – just at the moment when I am at my worst and most in need of their support. Feeling are hurt, blame is assigned, and the silence continues to grow.
But as with anything else in life, communiction from both sides is required to move past the stalemate. As a person with an illness who lives with rheumatoid arthritis day in and day out, it is sometimes too easy to think that everyone else should have the same understanding that I do. “What do you mean you don’t know what a DMARD is compared to a NSAID?” Sure, I’m an expert on RA – but tell me you have Grave’s Disease, and chances are I will have the same blank look on my face that I see on others when I tell them I have RA.
Sometimes it easy to forget that other people in my life struggle as well to hear about my pain, to see me limp down the hallway to the bathroom in the morning. Maybe the words of understanding and the statements of support will come, or maybe they will be stuck behind the fear of either not knowing what to say, or saying the wrong thing.
What I like about this book is that it does not rely on a strict set of rules; there is no specific formula regarding the etiquette of illness. When either party does not know what to say, that just might be the best thing to actually say.
“I just don’t know what to say.”
“Of course we don’t know what to say. Life does not prepare us for the blow that bad news brings. We don’t want to make it worse, we don’t want to frighten our loved ones with our anxiety, we don’t want to voice our worst fears, and yet we need to call. There is no training program for what to say, and some of us, happily, have very little experience. Some people I have met have felt abandoned in hard times by good friends. Sometimes people who ar ill and feeling abandoned will call their friends, but that is rare. It is the role of the “well person” to reach out. While it can be hard to initiate contact, doing so brings pleasure and solace to both parties.”
And if you still can’t find any words, there are plenty of actions that you can do to help a person who lives with chronic illness get through the rough patches. You can drop off a prepared meal, you can send a cd with classical music or guided meditations, you can call and ask why type of book they enjoy reading and pick it up at the local bookstore, you can stop by for a short visit, or you could offer to take their dog for a walk.
Another area that this book focuses on is advice giving. All too often, the balance in my life with chronic illness is overwhelmed by symptoms, fatigue, emotional issues, medicinal side-effects, and medical procedures. Just getting through day after day can be quite a challenge, and I sometimes feel like a juggler: one mistake and everything might come tumbling down. So when an individual, although with good intentions, comes to me and insists that I should take medicine x or try treatment y, it can be to much for me to bear.
“These directives arise from the best of intentions, but they are not respectful of the needs of the diagnosed person. The person with the disease is trying to make sense of all the options put forth by his or her doctor and in the literature, not to mention other people who have been through the same thing. There are choices to be made about conventional treatment, alternative treatment, and complimentary care. The person who is facing an illness needs to find his own may and make his own choices. It is very difficult to say, ‘Here is some information I have that makes sense to me; see what you think,’ than to say, ‘You’ve got to do this,’ ‘Take my word for it, this is what you should do,’ or ‘I don’t know why you’re not doing as I say.'”
This book presents many examples of how both parties can work through the intricacies of giving and receiving advice.
As a person living with chronic illness, I have benefited greatly from reading this book. I will also recommend it to family members and friends who are close to me in my life.
What advice would you give to somebody who is having difficulty in finding shows of support, or who might be overbearing in the shows of support that they do provide?
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!