I finally got around to reading The Etiquiette of Illness: What to say when you can't find the words by Susan Halpern. It's a book I've been meaning to read since last May ever since I read about it in the End of Your Life Book Club by Will Schwalbe.
It was okay but I honestly thought it was going to be better. I'm not really sure what I was expecting but Schwalbe described it as providing helpful tips for talking to his mother about cancer so I guess I was expecting more of a 'how to'-type advice book. Instead, it was really a collection of very short (a paragraph or two, sometimes a sentence) stories. The upside of that format was that it was incredibly easy to read in spite of the heavy subject matter. The downside was that I could only read a chapter or two before tiring of so many short stories. I'm not a lover of short stories so reading so many at one time was a bit much for me.
I also found it was quite cancer focused. Halpern was a counselor for people with serious illnesses and had cancer herself it makes sense but I feel like a better variety of stories could have been helpful. There was one chapter about chronic illness but again, that was from the point of view of someone who got cancer and now has to realize that they have a chronic illness.
Maybe it's because I've been in the hospital system for so long or because I'm the one who is ill but I found like all of the advice from the book could be boiled down into one thing: communicate with each other (but that would be a really short book). Communication is important for all when it comes to illness. Not just for friends/ family but also for the person with the illness. Keep an open communication and everyones' stress will be reduced.
For example, no one is going to know if you want people around when your hospitalized if you don't tell anyone. Or as the friend/family member, you don't know if the person wants a visit if you don't ask. Or if you're worried the person will die without having their fiances or will in order, tell them. Everyone will be a lot happier if there is communication on both sides.
Good communication will help overcome a lot of the fears about saying the wrong thing (I covered most of that in my tips for talking to people who are going through a rough time
post). Honestly, if you don't know what to say to the person, just say
'I don't know what to say but I want to be here for you.'
One story that stuck with me was someone who didn't tell anyone, not one person, about their cancer. Their reasoning was that they didn't want anyone to worry. Since this is the complete opposite of my coping strategy of talking to everyone about all my concerns, I don't understand that desire at all. In the end, the person regretted their decision, not just because they found the process isolating, but because it also meant they had to celebrate their successes in silence. I guess after a certain point it would be even harder to announce to your family that "Surprise! Today is my 1 year remission date of the cancer I didn't tell you I had, must have slipped my mind while I was having surgery. Celebrate with me and don't ask any questions!"
Point of the story: talk to those in your support circle. Don't have a strong support circle? Find a good support group in person or online. Tell people about your fears and concerns and wishes. It's as important for both the person with the illness and as it is for the family/friends.
The only other tip that I thought was helpful from a family/friend side, is the importance of adding 'don't feel you need to respond' when sending sympathies or a 'thinking of you' message. As a friend/family, the desire to express that you're thinking of the person is valid and welcomed but it can also be incredibly overwhelming to the a person with the illness to feel as though they need to respond to all the messages. Most people who sent sympathies or well wishes cards or emails don't usually expect a response but telling the person that it's okay not to respond could help relieve some stress.
I guess the book might help some people who don't have much experience with illness or the medical system. Or for people who love reading about other peoples problems. Or for people who love short stories. Or if you have nothing else to read. If you are one of those people, this book is for you.