Tuesday, November 17, 2009

“The Etiquette Of Illness”

I read this great little book, “The Etiquette of Illness,” by Susan Halpern. This book offers advice, but isn’t preachy. And some books are just written in a way that is soothing to read – this is one of them. (Thanks to the recommendation from Rheumatoid Arthritis Guy)

“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” (3).

Lately I’ve been thinking a lot about what I need from people. I’ve been having a hard time dealing with a lot of things in my life, and have really had to explore the relationships I have with others. I’ve realized that while a lot of people have not done a very good job of dealing with my health issues, I haven’t either, mainly because I haven’t known what to ask for, or even how to ask for help. In order to ask for help, you need to know what you need. And that’s a hard thing to do if you don’t really like having to ask for help.

I’m learning that I have to assert myself more, because if I don’t look after myself and my health, no one else will.

“Find the words that give you comfort and teach your friends to say them […] Given the sensitivity around what to do and say, unless the person who is ill speaks out loud with specificity and care about what pleases him or her, no one will ever know” (30, 223).

For me, there’s always the battle between the person that I am and the person I want to be. If it were up to me, I wouldn’t need help, and I wouldn’t be struggling to cope, and I wouldn’t be sick.
But that’s not reality. So the people that I want in the inner circle are the ones who really want to be there (this is, I think, what Halpern calls “the inner sanctum” (234)). The one thing in my life that I refuse to tolerate is disingenuousness and fakeness. If I put time and effort into a relationship, I want it to be real, and mutual.

“Opening the heart as a receiver of love and care makes exchange equal. It is not all one person giving, one receiving. It is the reciprocity of giving and receiving that gives rise to joy” (234).

It’s sad, but some people, whether they’d like to be able to or not, are incapable of giving of themselves unselfishly. What I’ve realized is that help has to come from a place of mutual understanding. And it also has to be unselfish on the other person’s part. It doesn’t really count if they are only offering help because they have ulterior motives or expect something in return.

“Compassion occurs when we open our feelings to the feelings of another person, without judgment, pity, or a need to fix” (219).

I’ve realized that whenever anyone asks me how I am, I’ve gotten very used to saying “good” or “fine.” Not that I want everyone knowing exactly how I’m feeling, I also realize that such vague generalities do no one any real good.

For me, a major “path of least resistance” is being a “yes” woman, even when saying yes comes at the expense of my health.

I was supposed to go to Yale at the end of September to present at a conference for a professor I do work for. The way the trip ended up being, I would have been in New Haven for 30 hours, and taken a total of six flights to get there and back. If that doesn’t spell F-L-A-R-E for me, I don’t know what does. Ultimately, I begged out of the trip a month shy of going, which is not something I would normally do. But I knew that it would be bad for me, and had the potential to derail the semester (which has turned out not to be a very good one, as it is). It was an expensive lesson to learn. But it was an important one. (And the world didn’t end because I didn’t go to this conference, shocking, I know)

“A little response to chronic illness goes a long way” (129).

I think what I’ve come to realize is that you have to let those in who want to be. Now, you don’t want to rely on people so much that they become tired and worn out. But you also don’t want to stare a gift horse in the mouth. For me, being there mostly means that I can call and laugh or cry with someone. It doesn’t mean being on guard 24-7, waiting for me to call or e-mail. But it means being there when I’m really having a hard time of it.

I’m the first one to admit that this is a forever thing. And it sucks. But it is what it is. And, for better or for worse, illness doesn’t just impact the sick person. Whether we know it or not, it impacts everyone that we come in contact with.

One day, I was flaring badly. And “a certain person in my life” picked up the phone and called me. Only my parents had really done that. It meant so much, and yet, my first thought was why. Why was this person doing this? And shortly after, I sent this person a message saying something to the effect of I don’t want you to know me like this.

We’re all afraid of something. And to be so open and vulnerable to someone, to let them see you at your worst, isn’t an easy thing to do. And when actions aren’t met with the desired response, at least for me, I immediately retreat and go inward again, opening myself up to others less and less. There seems to me to be a fine balance between what is and isn’t enough and what is too much.

Lately I’ve had several people make offers of help, and follow up by telling me that they really mean it. It’s interesting that these have all been fellow people dealing with illness. And like I said, I think this is the key. The offers have to come from a place of true compassion. And even if I say no, it doesn’t mean I don’t appreciate the gesture. In fact, I may appreciate the offer more than the action itself. It’s nice to know that there are people who truly do care.

And if someone calls and you don’t feel like talking, I think that’s perfectly okay. I know that when I’m in a bad flare, and I feel like I can bend steel with my teeth, I can be kind of cranky. So that is probably a time when I might say, “I really appreciate your calling, but can we talk another time?” I think whoever is on the other end of the line should understand.

I think this may be the book’s best piece of advice to those who are a part of a sick person’s life:

“Don’t let the loving, lusting, adorable side of your friend disappear” (13).

Recently, a friend responded to something I posted on facebook that the “old Leslie” never would have done something like that. And she’s right. And it’s nice to know that certain people know me that well. That’s all I want. No matter how down and depressed (or sick) I get, I hope that those in my life can always help connect me and bring me back to myself; and can bring out other parts of me than the sick persona. Because, you know, on occasion, I can be a pretty fun person. I’d hate for illness to kill all of my good parts.

“Expressing feelings of gratitude does not make us weak; it may make us stronger […] There is something in the saying yes that carries with it a helpless feeling” (28, 47).

I would like to say thank you to those people in my life who have been there, through laughter and tears, those who have let me tell them that I’m having a bad day pain-wise, etc. Sometimes it’s easy to not consider help, help. To let people do things that seem totally appropriate for the relationship you have, it’s easy to pass it off and not say thank you. Some people may respond, “That’s what friends are for,” or “That’s what I’m here for.” But saying thank you shows those people how much you care and appreciate them in return for all they do for you.

And I’m sure, that inevitably, as my illnesses evolve and change, what I need from others will change, as well…

(Halpern, Susan. The Etiquette of Illness. New York: Bloomsbury, 2004).


  1. Excellent post. You really captured exactly what I've been thinking about lately, but I never could have expressed it so well. Thanks!

  2. Hmm...debating picking this book up.

  3. Thanks for posting your thoughts about this, Leslie. It's hard for those of us who are ill to accept help from others, and harder still to tell strangers that we're ill at all. This sounds like a good book, and thanks to your review, I think I'll get it.

    I just have to say that, as hard as RA and Lupus are, you're fortunate (I know, I know...) to have it now, rather than 20 or even 10 years ago. There are so many ways to find community, information and comfort for these conditions these days. The Internet is a real gift. And the medical world has come a very long way since I first got RA, 22 years ago.

    You're very strong and very wise. And very human, which just makes you loveable. Be kind and gentle with yourself.

  4. Thanks for this great review, you did so much more justice to this book than I did. During my mother's recent visit she asked if she could read this book, and I was happy that she did. Wouldn't be nice if this was required reading for all family members of someone living with chronic illness?

  5. MAC - Thanks!

    Britta - Obviously I highly recommend it!

    rheumablog - You're right about how far things have come, but I don't think the same can be said for "healthy" people. I think there is still a big gap between the thinking of the "healthy" and the "sick", and that's a problem. And I appreciate you saying I am human and loveable. Needing a little encouragement right now :)

    And RA Guy - If it weren't for you, I never would have heard about this book, so I'm not sure that's true. And I love your idea of required reading!