What’s the Right Thing to Say to Someone Who Is Ill?

July 7, 2009 at 9:19 pm 3 comments

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-theclock 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 deal with the 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 Web sites 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.

Entry filed under: health, online health communities, Web 2.0. Tags: , , , .

How Useful Are Online Health Quizzes? Blogging for Fun and Profit – Or at Least for Validation and Insights

3 Comments Add your own

  • 1. Kate  |  March 10, 2011 at 1:04 am

    I know this is an old blog post by now, but the topic will always be current. Right now I’m emailing with a woman who was an acquaintance but has become a close email friend since I I heard about her cancer. I simply reached out to offer to help her set up a blog so she could keep her friends updated without having to write individual emails. She did that for a while but that gradually fizzled. Anyway. I want to share a portion of one of her emails because it addresses the topic of your blog post, Lisa.

    My friend said (and I’ve edited it to a shorter version), “I wanted to tell you what an impact your last e-mail had on me…truthfully I got quite emotional reading it. …I trust that you are speaking from your heart and not saying anything just to pacify me. (That’s not a question) You need to know that I immediately felt understood and that it was o.k. to have some fears. …I did not feel judged for having any of the thoughts that I do. It is amazing how many people would like to dictate how I handle this situation, even tho’ they have no idea how they would handle it, but seem to have a pre-conceived notion of the ‘right’ way. I have been told that more than a couple of times. …Anyway I so appreciate an understanding ear, and yes I’ll say it…bless you for having the ability to be so non judgemental. You truly are one of the few in my life that I think that I can speak to so freely and honestly…I feel heard. That to me is an amazing gift and I can’t thank you enough for it. You’re right, it is not negativity, but fear that you hear from me now, and certainly a little anger too sometimes. …Again I want to say how much I have appreciated your calming, and non-judgemental wisdom. It’s more precious than you know.”

    One never knows the right thing to say. What I’ve learned from my friend is that it helps her most when I’m completely myself, speak from the heart, support her every mood and feeling as being completely valid in the moment, including her fear and her anger, and reflect her feelings back to her in a completely non-judgemental way. And don’t offer a single personal opinion on how she might do things or feel about things or think about her situation. Basically, as Alexandra said above, “really listen”, “reflect back”, and “help them to feel heard and loved” no matter what.

    Reply
  • 2. Alexandra Carmichael  |  July 10, 2009 at 10:21 pm

    I’ve found the best thing is to practice active listening. It doesn’t matter so much what you say as to start a conversation and really listen to whatever the other person is saying, reflecting back their feelings, showing a genuine understanding and care. Look for ways to help in what they say, but mostly listen and help them to feel heard and loved.

    Reply
  • 3. Diane  |  July 10, 2009 at 2:25 am

    When learning about someone’s miscarriage or an illness such as cancer, I have found that a supportive expression is “I am so sorry that you are having to go through this experience…” Sometimes anything more can be interpreted as not connecting or understanding — like in the case of a miscarriage,”it was God’s will.” or “there must have been something wrong with the baby”. It’s often helpful to listen and let the person say what they feel and then verify their challenging experience.

    Reply

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Lisa Gualtieri, PhD, ScM

Lisa GualtieriLisa Gualtieri is Assistant Professor at Tufts University School of Medicine in the Department of Public Health and Community Medicine. She teaches Online Consumer Health, Social Media and Health, Mobile Health Design (online), and Digital Strategies for Health Communication (1 week summer institute). Contact Lisa: lisa.gualtieri@tufts.edu

@lisagualtieri


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