This post is part of a Patients For A Moment blog carnival that Duncan is hosting. This month’s PFAM blog carnival topic is “What is your favorite book about illness?”
(Note: Those of you who interact with me via twitter, etc know that I read voraciously. This means that my favorite book about illness today may not be my favorite book about illness tomorrow. I’m going to try to post book reviews from time to time of books that I have loved or not loved and why. However, for the sake of this blog carnival topic, I decided to pick up a book that was recommended to me, but I hadn’t read yet. As such, it isn’t my favorite, but I thought it was worth writing up a post about. I’m excited to see what other bloggers chose as their favorite books. I think my to-read list is going to be growing considerably in a few days…)
The book How to Be a Friend to a Friend Who’s Sick by Letty Cottin Pogrebin was recommend to me by my therapist when we were discussing how hard it is sometimes for me to be a good friend and equally to deal with unsupportive friends/family. Pogrebin started thinking about this topic when she was fighting breast cancer and noticed the varied reactions of her friends and family. The book is actually a collection of short stories from people with varied experiences intermixed with Pogrebin’s own story. What I liked about the book was that she included the reactions to friends’ behavior as well. There are Dos and Don’ts lists and varied suggestions for how to rephrase common questions that are inadvertently offensive or difficult to answer. I chuckled over her commentary and lists of commonly heard comments and questions, many of which I’ve heard myself. A lot of this advice feels obvious, but it’s easy to forget in the stress of seeing a loved one fighting what they’re fighting. Moreover, I think different people will get different things from this book based on what their experiences have been so far and what sort of guidance they are looking for. It did seem a bit long, but I think that’s partially because it’s clearly geared to be helpful even to people who have never had an ill family/friend before.
I think the trick to reading this book (for both patients as well as friends/family) is to try to keep an open mind, remember that everyone’s needs are different, and not to get too offended when you disagree with something that Pogrebin or one of interviewees opined. The book is theoretically aimed at the friends/family of patients, but I think patients can get a lot of out of this book as well. One of the things that made this book feel more appealing for me was the inclusion of incidents in which Pogrebin felt she had failed her friends/family in terms of offering support. And, in truth, even a person fighting a chronic illness can be inadvertently unsupportive of someone else fighting the same illness, because the two people have completely different needs from their friends. There is no one size fits all answer to the “How do I be supportive?” question, and this book drives that home.
As a patient, it’s nice to hear stories that show me that I’m not the only one that has struggled with incidents where friends/family that I rely on were unsupportive. However, reading through these stories was also a great reminder that people generally don’t intend to be unsupportive. They want to help, but they don’t know how to help ME. I emphasize that because one thing that struck me as I read this book was that with so many people fighting so many varied illnesses, especially when combined with how much each person’s needs vary from the next, it’s entirely possible that friends/family are doing what they were told was helpful and supportive for someone else. If you’re told that it was helpful once, it stands to reason that you would offer the same help/advice again. From a patient’s point of view, one of the best things that I got out of this book was a reminder that I need to be clear about what I need from people. It isn’t fair to always assume that they’ll be able to guess, especially if what I’m going through is totally beyond the context of their own experiences or that of their other close friends/family. Reading what worked for other people gave me some new ideas of how to direct my friends/family towards what is actually helpful, hopefully without making them feel hurt or offended, because I know deep down that they’re only trying to help.
For friends/family looking for ideas on how to be supportive, this is a really good place to start. Reading different people’s experiences might provide a more detailed and diverse view of what a patient is feeling in these circumstances. This book may also provide some guidance of what is commonly found to be offensive. Of course, what one patient in the book found helpful might be totally offensive to your own loved one. However, the book can only provide a limited amount of guidance here. This is what I would suggest: I think that the lists of Dos and Don’ts are a good place to start. Pogrebin also included helpful re-phrasings of common questions/comments. For example, “What are you feeling right now?” instead of “How are you feeling?” or “I can only try to imagine what you’re going through.” instead of “I know just how you feel.” These are a good start, but at the end of the day I think that most people would be open to your sitting down and saying “Hey, I can’t begin to understand what you’re going through, but I really want to be supportive. Here are the things I’ve read, but I don’t know whether they apply. What would be helpful for you?” Remember, though, that if you ask and then don’t follow through, that person is going to be even more confused. The fact is, if you’re reading blogs and books to find out what you can do to be helpful, then you’ve already realized that you don’t have the information that you need. Blogs and books like this one can get you part of the way there, but you need to be able to customize that information to your loved on. There’s only one person who can tell you what you truly need to know, and just sitting down and having an open conversation shows how much you care and makes it possible for both of you to be happy in your friendship.