Cancer is not one disease and there is more than one way of coping with a diagnosis. While some patients research every aspect of their illness, treatment, and prognosis, others would rather have their physicians sift through information and chart a particular course of action for them.
While many people with cancer or other illnesses may agree on what they like to hear (or not hear) from friends, family, and acquaintances, Bruce Feiler’s New York Times piece “‘You Look Great’ and Other Lies” falls victim to assuming that just because it is true for Bruce means it’s true for all. While he does use “many” and “most” throughout the piece, his list is prefaced by “Six Things You Should Never Say to a Friend (or Relative or Colleague) Who’s Sick.” If Feiler’s piece were a blogpost I might not feel the need to react in such detail; however, as a highly visible piece, I suspect there are many readers saying to themselves, “I say a lot of those things… was I really that wrong?” All day yesterday my Twitter followers were asking my opinion about the piece; they wondered if he was right.
I recognize that there is a lot of good advice in his piece, and I want to acknowledge how hard it is to write a short article about such an important and personal topic. I think that opening up this subject to a larger discussion may allow readers to see the variation in reactions: remarks are interpreted in a variety of ways by different listeners. Even the same remark may be interpreted as harmless one day and loaded the next; hard and fast rules are unlikely to apply.
Thus far on my blog I have resisted writing rules about what people should and should not say. Readers have forwarded many such lists to me for my opinion.1 At the time I was diagnosed, I was the first of my friends to have cancer; I didn’t have anyone I could ask for advice.
I was often annoyed with the comments people made. I felt some were just silly (“It must be nice to be able to have time to rest in bed during chemo”) while other comments seemed hurtful or downright rude (“Is your cancer what is going kill you?”).2 While I was frequently upset or offended by statements people made, I didn’t articulate a list like Feiler’s. Why? While I reacted negatively to some things people said, I still felt that in most cases their intentions were good. That is, they might have made comments that were not helpful, but they weren’t making them to be hurtful. They might have been nervous, naïve, or clueless, but they weren’t trying to be cruel.
While the hope is that people will think before they speak, saying “these are the things you must not say” will make people even more self-conscious. The danger is that people will do something even worse than the things Feiler mentions: they may remain silent and not offer any help or express any affection at all for fear of saying the wrong thing.
Many people don’t know what to say. It’s wonderful to have some suggestions of what you should say as Feiler does (and I think he’s spot-on with every one of those). The danger of criticizing in harsh terms is that every person you’ve interacted with then feels the need to ask, “Are you talking about me?” At that point you are put in the position of consoling those who should be helping you. Frequently I found myself in the position of comforting others about my own diagnosis or that of one of their relatives. My recommendation is to avoid telling a person with cancer about your friend or relative who either had it and has lived 20 years (implies their fears are unwarranted) or that a person you know died a terrible death (discouraging).
One main criticism of Feiler’s piece is that it makes no distinction of or allowance for social proximity. That is, the expectations we have for what others should say to or do for us varies in relation to how close we are to them. It may be reasonable to expect a spouse or best friend to clean your refrigerator but not for your child’s teacher to do so.
Now, on to more actual details of the piece.3
It’s interesting that Feiler assumes the offer of food is innocuous. He claims food was one of his great helps and implies that this is a safe way to offer help to those in need. I explicitly forbade food to be brought to my house. I didn’t want anyone spending time or money preparing or purchasing food that might not get eaten. One friend reported that while her son was being treated for leukemia, well-wishers sent so many lasagnas that her kids could no longer look at the dish after a few weeks of receiving them. Similarly, smells eminating from food can often be offensive during chemotherapy.
Feiler starts his list of helpful speech and behavior by outlawing the questions, “What can I do to help?” and “My thoughts and prayers are with you.” he tells readers, “Just do something for the patient… Want to be really helpful? Clean out my fridge, replace my light bulbs, unpot my dead plants, change my oil.” Gee, I’d like someone to do those things for me even when I am not sick!
These things are not only unrealistic in most cases (live far away, don’t have a spare key to the house) but also impractical. These sound like suggestions for close family and spouses/partners. Perhaps saying, “Where’s your to do list—I’ll pick something off of that” might be more reasonable. I don’t want anyone in my house, actually, and how can you know what to do unless you ask?
To me, asking “what can I do to help” is not the same to me as “Call if I can do anything.” His point is that it “puts the burden back” on the person who is sick to come up with a way to help. I predict most people have their mental “to do” list available and could reel off a few suggestions to those who would offer. Close friends can just “do” or insist in a way that others can’t. I do agree with him that being more forceful about helping is the right way to go, just not to the degree he does. Taking children for playdates (phrased as “We’d love to have your child over, please let us/we won’t take no for an answer”) is a lot more likely to receive approval than, “What can I do to help?”
Further, those who are ill may take pride in being able to accomplish a task themselves. I wanted to be able to do small tasts to contribute to taking care of the house. It’s not realistic to think an acquaintance is going to march into your home and scrub your toilet; after all, it’s hard enough to get those who actually make the mess and live there to do it. Arranging for a cleaning service to come might be more helpful. Often it’s easier to allow strangers into the home than friends; and it could be done while the person it at chemo treatment, for example. (with care taken about fumes and smells that might trigger nausea). Offering to do grocery shopping or be available to receive an online grocery delivery might be good, too. There is a whole post I could write about suggestions for how to help a friend.
Feiler also outlaws “My thoughts and prayers are with you.” He writes, “In my experience, some people think about you, which is nice. Others pray for you, which is equally comforting. But the majority of people who say they’re sending ‘thoughts and prayers’ are just falling back on a mindless cliché.”
First, I think this is an extrememly personal reaction. How a person deals with severe illness is highly charged. In my case, I don’t want your prayers under any circumstances. I don’t believe in God and I don’t want you to pray for me. I didn’t tell anyone not to do it; after all, it made them feel that they were doing something for me. However, it also smacked of illogicality; why pray now? The damage is done: I’ve got cancer. I don’t believe that your prayers will make the difference as to whether I live or die from it; after all, I am quite sure that the people who die from cancer every day have people praying for them, too. Feiler assumes again that what is good for him is good for all– not all people with cancer will find prayers comforting. It’s a bit confusing because he also says it’s something not to say; I’m not sure where he really falls on this matter.
Second, when someone says, “My thoughts are with you” (a phrase I use often and am not about to stop) I think it can be nice. When you live far away or don’t know someone well it can an expression said with genuine concern; when said to a close friend or family member it expresses affection while feeling powerless in such a terrible situation. I believe that to be true.
I counsel: empty phrases said without emotional authenticity are likely to fall flat with the recipient. But I think telling people not to say, “I’m thinking of you” is extreme.
I wholeheartedly agree with his #3 (“Did you try that mango colonic I recommended?”), #4 (“Everything will be o.k.”), and #5 (“How are we today?”): double emphasis on numbers 3 and 4.
Then we come to #6 (“You look great”). This is the one the title points to as “a lie.” One major criticism of the piece is that “You look great” is not necessarily a lie (and I believe the compliment most often is true). I think what Feiler is sensitive to is that we have no way of knowing if it is in our particular case that someone is lying or not. Even in the midst of terrible sickness it’s likely the speaker means “considering everything you’ve been through” which can still be an honest compliment. Also, many people appreciate being told they look great, even if the truth is questionable. Some days it doesn’t take much to lift your spirits. In the piece Jennifer Goodman Linn said, “When people comment on my appearance it reminds me that I don’t look good.” She is convinced she looks bad and doubts the honesty of the comment. Why can’t it be that she does look good? Why isn’t there room to compliment anyone on how they are dealing with things?
As I see it the real core of the problem is that “you look great” might imply that “you can’t be that sick.” Observers are trying to reconcile the disease inside with the appearance outside. When pictures of Gabby Giffords emerged yesterday, for example, everyone including newspapers commented “how great she looks.” I did not. While I thought it, and believe it (I guess Ms. Linn would find that impossible to believe), I didn’t say it because I was not trying to undermine the seriousness of her condition. Just because she looks good doesn’t mean she isn’t terribly affected cognitively and physically by the aftermath of being shot in the head. Just like when your hair grows back after chemo and everyone takes this to mean you are “all better,” serious medical situations can be present even when not visible to outsiders.
I loved when people told me I looked good. I looked sick, of course. But the effort I took to put makeup on or compliments to how I wore a scarf to coordinate with my outfit were nice. On a day I felt sad I always loved a compliment.
The irony is that illnesses that are invisible can be harder to live with. “I know you are sick but you look so healthy” is not helpful. It’s always disconcerting when someone who “looks healthy” is diagnosed with a serious disease or dies suddenly. These situations strike fear in all of us because being healthy makes us feel protected. When someone looks like us but is concealing serious sickness it can make us feel vulnerable– but that is not the patient’s problem. I again revert to the advice that you should say what you honestly believe. I don’t think it’s always a lie and I don’t think it should be on the list of outlawed expressions.
“People reminded me that I had a free ‘No’ clause whenever I needed it,” said one person in Feiler’s piece. My advice: let those who need to use it do so. When a friend got her own diagnosis of breast cancer, she assumed she would easily be able to opt out of being a Girl Scout troop leader during surgery and chemotherapy time. Instead, she was not given a gracious “pass” and no one offered to fill her spot (that would have been one way to really help). Instead, “But you’re still going to be able to be a leader, right?” was the reaction that met her.
I totally agree with the suggestions Feiler makes for things to say (Don’t write me back, I should be going now, Would you like some gossip, and I love you). I think there are more, but I think he’s got some perfect ones to start a list there.
Elsewhere I’ve asked readers to contribute the strangest/rudest things people said to them when they (or a loved one) had a serious illness. Some of the responses there are definitely statments I would caution people to think twice about saying. I also heard:
“Is it terminal?”
“What’s your prognosis?”
“It could be worse, you know.”
“Everything happens for a reason.”
“It’s all part of a larger plan.”
“Now that you’ve been through this you’re due for some good things to happen.”
“I’m sure it’s fine/I’m sure it’s nothing” (similar to Feiler’s “Everything will be okay”). And there are many more.
There is an anger that can divide friends and family once a person is diagnosed with an illness. “You just don’t get it” or “You wouldn’t understand” can be a common refrain whether silently or outwardly expressed. The same words spoken by a friend/acquaintance/colleague may be interpreted differently depending on the day or mood of the patient. I quickly learned that physical pain and emotional agony trumped all; I had little patience or care for others when I was hurting. I learned to withdraw during those times or only discuss it with those who did understand. My hypersensitivity was undestandable but not necessarily easy to be around. The desire to be understood is part of how the ill connect, attract, and cling to one another. The fact that most people with a serious illness can rattle off offensive or ineffectual questions or comments made to them means they are important.
Feiler’s piece struck me as one in which his feelings of “you just don’t get it” were overwhelming and raw. While much of the advice is good, in the end I am critical of him for the same reason I didn’t make such a list during treatment: if you go around telling people how what they did was so wrong all the time, and things they should never do, soon enough they won’t say anything for fear of disappointing or offending you. In those cases you may lose people who may have been well-intentioned. Sometimes forgiveness and compassion need to go out from the person who is sick and not just flow to them. I guess I shouldn’t say that will work for everyone, but that’s what works for me.
- For those who don’t know my history, here it is in a nutshell: I was diagnosed with hormone receptor positive, BRCA-1 and 2 negative, stage II invasive ductal carcimoma of the breast 4 years ago. I had a double mastectomy with reconstruction, 4 months of chemotherapy, and an oophorectomy eighteen months later. I had 3 children at the time of my diagnosis, the youngest was 7 months old and had his own serious medical condition to deal with. [↩]
- While I may use the example of cancer in this post, Feiler and I both are referring to any serious illness. I refer to cancer because that is the most serious of the conditions I have had experience with. Insensitive comments are by no means confined to the diagnosis of cancer. [↩]
- While not Feiler’s fault, I’d like to question the title “’You Look Great’ and Other Lies”… what exactly are the other lies mentioned in the piece? [↩]