What to say to a person who is sick

When I ran into Paul S. not knowing he had cancer, I barely recognized him and struggled with what to say. “What happened?” didn’t seem appropriate, although it was my initial reaction. I believe I said, “I barely recognized you,” which was true. I’ve been in many situations where I wasn’t sure what to say to someone who was ill or in distress; I wanted to be supportive but wasn’t sure what would be perceived as helpful.

I’ve been on the receiving end too; most recently when my father died and I remembering saying to myself many times, “I know he/she means well” when their words did not comfort me. I only once curtailed a conversation, when, within minutes after hearing about his death, a friend started telling me a long, involved story about a mutual friend’s father. I stopped her, said that I knew she meant to be supportive but I could not listen right now, and walked away.

People so often mean well but don’t know what to say. I asked Paul S. what he found helpful and he thought it was very dependent on personality. He describes himself as “a very logical, rational, controlled-emotions kind of person, so I hear comments such as you made as empathetic or at worst neutral. ‘Wow, Paul, you look like crap!’ ‘Darn right – I feel like crap.’ I actually like that. But I have known other people who are really bothered by exactly that type of observation. They want sympathy and understanding, but not observation, if you get my distinction. A worried look, and an inquiry about how they are feeling, seems to be what they need. Which I value too. So I guess that’s the safe thing to do.”

When I told Paul about my experience with the friend who I walked away from, he understood my reaction and said, “What I did not want to hear is what you heard: somebody else’s story, not really relevant, and depressing. That’s indicative of a person who isn’t able to listen.” Of course, I was the one who was actually there and don’t think that the person couldn’t listen, but didn’t know what to say and felt moved to say something. The opportunities for mismatch between what one person says and the other person needs are abundant!

The difficulties are compounded by the distinction between advice and information, as Paul articulated, “The other thing I did not want to hear is advice about what I should do or not do – I’m getting the best care available, and I’m pretty competent to take care of myself. But then unsolicited advice is almost never welcome, right? What I did appreciate, however, was information. I didn’t include this in my story, but when I shared my situation with a friend at church, he reported that his mother had experienced something similar and had done extensive research on the web regarding Cisplatin and hearing loss. At my request, he contacted his mother who then e-mailed me several specific web links to good information sites. That interaction spurred me to do more research than I had done before.”

When I ran into Paul, my immediate thought was not to offer meals or rides, but sometimes this is the most helpful thing one can say. Paul agrees: ”The other thing that was nice, though I didn’t really need it, was offers of help, such as rides to chemo or offers to bring food or visit. I think it’s my personal style to not want or need much of that – I was able to drive the whole time, and didn’t want to put somebody to a lot of trouble; my taste buds and my appetite were shot, plus my partner was taking care of my food needs; and I just wanted to be left alone to vegetate in front of the TV when I felt bad, and not feel like I needed to keep up a conversation or be nice. But I’ve known other people – my (now former) partner is one – who in a similar situation would want almost around-the-clock company and help. So it’s good to ask and offer help, as long as you’re prepared to accept ‘thanks, but no thanks’.”

While Paul doesn’t think he is typical, it may be that no one really is in times of need. Which, of course, helps one to appreciate the people who do say or offer exactly what you need at that moment.

Paul also dealt with the common problem of how to keep people informed through email, which is a way of reaching out to people as well and a way of avoiding having the same conversation repeatedly. Paul recounted his experience: “On a closely related topic, something I did that had a surprising and wonderful result: When I entered the hospital, I did a broadcast e-mail to a ton of friends, advising them of the immediate situation and inviting them to opt in to periodic e-mail updates. More than 60 people opted in! Sending those broadcasts helped me feel connected, and I often got lots of replies. But the most surprising thing that kept happening was that they thanked me for keeping them posted. That blew me away. It still does a year later. True friends want to know, want to share the burden. Too many people feel ashamed or embarrassed or unimportant, and they miss this incredible opportunity to strengthen relationships by sharing their situations. Sure, there are folks who complain too much, so it can go the wrong way. My messages were factual and hopeful, even when I felt like crap, and that seemed to inspire a lot of people, which in turn made me feel that something good was coming out of this not-so-good time. I don’t know whether this fits into what you’re trying to do, but I would sure encourage people who find themselves in similar situations to reach out and stay in touch.”

There are websites for exactly this purpose, but email is certainly simple and, in this case, effective. There are also many people who blog their illness; one of the most moving that I read was NPR journalist Leroy Siever’s My Cancer.

Lisa Gualtieri is Adjunct Clinical Professor in the Health Communication Program at Tufts University School of Medicine and blogs at her self-titled site, Lisa Neal Gualtieri.

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Comments

Nepenthe
I think the most important thing is to listen. We so often forget to do this. You can ask if there is anything you can do to help, but most of all, if they begin to talk, then just be an open listener. This is especially true for a person who has suffered the death of a loved one but is true for illness, too. After years of saying all the wrong things, I finally learned to listen. Whether they want to tell you about this person they loved, or about what they are going through in the course of illness, just listen.
http://www.msrenegade.com Marie
I’ve referenced this issue many times on my blogs.
As someone with a chronic illness, MS, I have been on the receiving end of some jaw dropping comments. My mother, for instance, will tell me every time she sees an obituary that cites MS as the cause of death. Someone at church, when she found out about my diagnosis, said “Oh, I guess you don’t have the bad kind though.” This was an otherwise lovely, kind woman, a college professor. She just wasn’t thinking.
That is part of the problem, speaking before thinking. But I think the bigger issue is that we are generally not taught what to say or do for someone who is ill or in distress. There is a gap there, partly because it is such an uncomfortable subject and partly because we are all so different in how we cope.
But, as Dr. Gualtieri points out in her thoughtful article, it is a skill that can be learned.
I also just put up a post on the same subject. I call mine “Being There”, because at the end of the day, that is what we all need from each other.
http://lisagualtieri.com Lisa Gualtieri
Thank you, Nepenthe and Marie, for your thoughtful comments. I agree about the importance of listening, which is hard in this and many unrelated situations. I agree that it is a skill that can be learned and perhaps the biggest issue is to set aside one’s emotional reaction and to be empathetic. I did this recently with an ill neighbor – instead of saying “How can I help?” which I shifted the responsibility away from me, I said, “Come for dinner tonight or we can bring food over for you”. It worked since it helped my neighbor and also made me feel like I was helpful. Bridging the gap from meaning well to doing well can be hard!
Kim Lucas
Knowing what to say is challenging. It is not some thing we do on a regular basis so we do not get much practice. I have had many friends who have experienced serious illness, especially cancer note that many friends just do not call anymore. I wonder if the fear of saying the wrong thing or not knowing what to say is one of the causes. I would prefer a friend choose to communicate and we will hopefully get over the awkward part at some point.
AnnR
I go for “how’re you?”
After that I think the visitor is ahead to do stick to short visits or check-ins. Keeping your visit short reduces the chances you’ll blunder into some offensive statement. If the doctor shows up while you’re visiting someone at the hospital you should exit immediately. You can come back tomorrow.
Offensive statements are easy to blunder into because everybody is different and what offends one person may not offend another.
For major illnesses I like patient web sites like Caringbridge. It allows the sick person or their family to frame the presentation. A mass email is fine too except that sometimes people get those clobbered up when someone hits “reply all.”
http://minochahealth.typepad.com doc
It is a complex issue and it can be tempting to over-generalize the process. Obviously listening is the most important aspect, but then there are competing time constraints.. The approach I have taken is ending with an open ended question like, “is there anything we did not discuss that I should know” or some variation thereof. This helps smooth out any edges from the encounter and makes sure nothing important is not missed, especially from the patient’s perspective.
gzuckier
People are mostly just trying to communicate empathy. Whether it’s “I do now what you’re feeling because” followed by the lengthy story, or the “well, you’re lucky because” etc. etc., they do mostly mean well.
http://www.curbside.com/ Rich @ Curbside
Great post Lisa,
“Slow to speak quick to listen”…seems like the appropriate response.

What to say to a person who is sick

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