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Saturday, January 21, 2012

Visiting seriously ill people - dos and donts

"Do you agree with this?" wrote a friend yesterday who referred me to this site

It was about what to say and what not to say to seriously ill people you are visiting.

I read it, and then passed it on to Tracey, without offering an opinion on it myself.

"What do you think of this?" I asked her.

To put you in the picture, if you're not already aware of it, I am one of the people to whom the article applies. I have a malignant brain tumour; a deadly one, which by all medical histories, is not going to go away.

But I am fortunate to have quite a few friends and former colleagues who visit me.

When we compared notes verbally, it turns out Tracey's views are pretty much the same as mine, and neither of us agree with everything in the excerpts in green below. A lot of it is right according to our views, but some things I have quite strong reservations about.

Here's what was said (and I thank Mia Freedman wholeheartedly for bringing this matter up):

Bruce Feiler author of “The Council of Dads: A Story of Family, Friendship and Learning How to Live”, recently shared an excerpt of his book in The New York Times. Bruce had bone cancer; he also had 3-year-old twins, a working wife, nine months of chemotherapy and 15 hours of reconstructive surgery to deal with. When someone asked his advice on how to handle a mutual friend's brain tumour, he came up with a list of things not to say to someone battling a dire health situation:

1. “What can I do to help?” (Don't ask, be proactive).
My response: I don't agree. It is not necessary to be proactive unless you are certain what it is that they need or want. For me to expect proactivity is often asking too much of the friend, who is probably already aware of their own limited knowledge of the circumstances. If they think I expect proactivity, it may even keep them away.

Asking sincerely what you can do to help is fine, when you don't know what you can do that will help. It could be that your 'proactive' help creates more problems than it solves, however well meaning it may be.

2. “My thoughts and prayers are with you” (A tired cliché)
My response: I don't agree. These words, sincerely meant, are perfectly valid and appreciated by me, regardless of my personal views on religion or particular religions. I find this being referred to as a "tired cliché" quite offensive to the sincere views of the well-wisher.

I have had Christians, Muslims, Hindus and Buddhists AND a Wiccan all tell me that I am in their prayers. I am grateful for those, fully accepting of them and absolutely respect their intention.

Likewise - and often it comes from people who are not religious - to be told I am in someone's thoughts is an uplifting experience and one I value greatly.

3. “Did you try that mango colonic I recommended?” (Leave treatment advice to the doctors)
I'm fairly much in agreement with this one, although I don't mind in the least someone referring me to possible treatments and giving me the opportunity to consider their merits. But suggesting I should be 'trying' something they've chanced across which could totally stuff up my current treatment.... no, don't do that. Do it only if it's cured you personally of my terminal condition, and you can provide all the evidence!

4. “Everything will be OK.” (You don't know that)
Agreed. That is a totally pointless, meaningless and even insulting thing to say. BUT... sometimes people say things like that when they really mean, "I wish that things would be OK" - and a seriously ill person should always be prepared to accept such well-meant slip-ups with good grace. Hell, before I got this thing I wouldn't be surprised if I had blurted out something inappropriate myself to others with serious illness, especially if caught on the hop by it, so one has to allow some leeway.

5. “How are we today?” (Sick people aren't mentally diminished infants)
Well, true enough, put in that patronising way, but being asked how I am feeling when a friend meets me after some time seems pretty normal to me. They better be prepared for comments about how I really am feeling though, if the question is sincere.... 

From my own experience, and what I've seen and read, people in my category are happy to be very frank about their illness, so don't shy away from asking anything if you want sincerely to know. Naturally, I reserve the right to answer it or not, but you can be fairly sure you'll get a straight answer. Not that the ill person always has an answer.

6. “You look great.” (Don't focus on externals).
Again, it all depends on the sincerity of the compliment. It is a great irony in my case that my face does look better than it did three years ago, and I'll tell you why.

I was living then on about five/six hours sleep a night, which I'd done for many years. I was rather proud of that in a dumb way, but one time I fixed a videocam in place for an event we were filming and crossed in front of it and looked back at the lens, so it recorded my face looking into the camera.

After I was diagnosed with a brain tumour and began treatment, I was sleeping much more. People visiting me subsequently would often tell me how much better my face looked (always a back-handed compliment, but never mind....)

By accident one day after months of treatment for my illness, I came across this tiny clip of before-diagnosis video that had caught my face staring into the camera, and I was shocked at how weary, strained and lined my face looked. Before I got sick!

I too had got used to my 'new' unlined face with much less prominent frown and bags under my eyes.

So it just might be that you DO look better, even though you might not be feeling that way. Why should one assume insincerity?

Still, the author is right to suggest not to focus on externals.

On this last point, one of my friends had stomach cancer when she was younger and lost a lot of weight during treatment. She works in fashion and I vividly recall how colleagues would say, “You look fantastic”. Even when they knew why she was so thin. Maybe they thought it would cheer her up. It simply made her upset.
I guess it could, but that's because her perspective was quite different, and it's sad that she didn't realise they were probably telling it exactly as it was from theirs, unless she knew they were not being sincere. 

But OK, I can see where she's coming from, especially in that industry.

Meanwhile, Bruce Feiler's list of things you should say includes:

1. “No need to write back” (Keeping up with correspondence can be overwhelming)
I very much agree with this one. People often write, and ask a long series of questions. They are doing it out of genuine interest, I'm sure. I really don't mind the questions, but I do reserve the right to decide how, what and when I'll reply to them. 

To be told there's no need to write back is comforting, as long as I can believe it's sincere. Given I have only one typing hand, some friends can have no idea what they are asking of me if they expect full answers - much as I would like to give them. 

That tension between answering and not answering can be very frustrating for me, because it looks like I don't value their friendship and concern, and nothing could be further from the truth.

The irony here is that most of the answers to "how are things going?" questions can be found right here on my blog in the WHAT'S NEW! section. I know a blog is impersonal but corners have to be cut. If you've read that section and still have questions, that's fine. Ask away. I really appreciate knowing that the person has checked with the blog first.

2. “I should be going now” (Short visits are best)
Very, very true. I love visits by friends but become very animated because it's so enjoyable, but they can take a lot out of me. The best friends are those who keep their visits shortish - but, do believe me if I tell you to stay a little longer. If it is time to go, I won't say that, and don't be offended if I readily agree with you that the timing is right. Tiredness can hit very quickly, no matter how close a friend you are.

If you feel visiting is your duty or a task, and not a pleasure, then please stay away. We'll both be happier if you do.

3. “Would you like some gossip?” (Distraction is helpful)
Yes!! Nothing like hearing some good gossip (or common-interest discussion)! Housebound as I am, it's amazing what things I don't get to see and hear, especially on the local scene.

Gossip is great - though remember it's a two-way process. There's no need to fill momentary silences. Occasionally friends have left and I haven't had a chance to say or ask what I would like to!

4. “I love you” or “I'm sorry you have to go through this” (Honest expression of emotions are a powerful gift).
Yes. Well said. No need for me to embellish that.

I sent his article to several girlfriends at various stages of their health battles - some in the middle, others out the other side - and they agreed with every point.
As you see, I don't agree with some of what's said, and it would be wrong to assume agreeing with "every point" is how every seriously ill person feels.

You will note there's one word that runs through this whole thing. Sincerity. You know what? That's all I ask, really. I know that it can be terribly hard to know what to say, and every person (patient or visitor) is different. What may be a negative trigger for some has the opposite effect on others.

So if you're visiting someone - or being visited - do think about these things, and don't expect to get it perfectly right. No-one should be expected to be. If you're the ill person, visitors have as much right to courtesy in what can be very difficult circumstances for them as do those being visited.

Just be sincere.

Disclaimer: I've not read Feiler's book so it may be that what's above is out of context or covered differently in some other part of the book, but I've been exposed to just what the readers of the article have been.


  1. Denis, thank you very much for sharing these thoughts.

  2. I'm so glad to read your comments, as I read that article and did wonder if it wasn't written from a rather harsh point of view. So many of the things that were prohibited did seem to be expressions, however ill expressed, of well-meant concern and affection.

  3. I'm very glad you agree. Again, the comments with little context may look harsher than they are in the book, and it's a great idea for him to expose these thoughts to those who have to face a visit of this sort.

    Come to think of it, it doesn't matter much what's said; it's the spirit in which it's said that counts.

    Thanks also to Bizzy Lizzy.

  4. Denis, I think of you, I love you & even pray for you, I wish I could visit briefly but it isn't possible. Having said that & not comparing a shoulder reconstruction to your challenges - I might just say this,during the last couple of months I have been driven to strong private swear words by those who tell me they have me on the prayer list, who send me God message emails, who wistfully wish they could DO something for me but they've gotta go to an appointment.... well, I do not underestimate the power of prayer for those who do it, receive it & take comfort from it, but what about a practical visit? In ten minutes you could make me a cup of tea, open a packet of biscuits, rip open a frozen meal?!! You could use both those workable hands unscrewing a few jars for me, put the dustbin out, put de-odorant under my right arm,draw some eye brows on me (!) pull up the left side of my knickers.......and hold up the other side of The impossible to read "Age" newspaper!!! Too much information? Well, Den, I know you will be laughing because you so know the hazards faced! Although the eyebrows you might give a miss.I don't ever want to forget this experience because it is making me aware & while I am praying I will be much more darned use when I CAN visit! Kiss kiss kiss.

    1. Thanks, Lena, and I understand your feelings. If the invocation of a deity is a substitute for action, then it doesn't amount to much, though I, like you, know that people have busy lives and their time is precious as well.

      I really share your frustration with little tasks that need two hands with strength and coordination. I'm happy now that I can do some of the things that reduced me to impotent fury at times, like difficulty using a spray-on underarm deodorant and not having the strength in the right hand to push down the button and hold the can at the same time.

      But struggling to achieve little tasks and accomplishing them is satisfying when successful. Tying shoelaces, e.g! And putting on the jocks. I'll leave you to sort that problem for yourself!

  5. Interesting article & enlightening comments from you. Since this (and on Twitter) is a "visit", let me ask the proper behavior: do I mention your illness, ignore it, or comment on it when you do?

    Since so much of your blog is about living with this disease, I feel I should mention it/ask how you're doing/SOMEthing!, but I don't think of you as the disease. I usually reply to something unrelated & innocuous, because I find it interesting. However, I wonder if I should someimes make mention of the "800 lb. gorilla"?

    btw, IE7 brought up the page, but wouldn't scroll, so I'm trying this in Firefox. Hoping my comment will post this time. :P

    Hugs from Pegs. :)

    1. Thanks, Pegs - a faithful Twitter buddy from Texas who knows lots about all sorts of stuff!

      As to your question, I appreciate the 'etiquette' dilemma. I'm a bit the same way about your medical history.

      It's fine to ask anything, especially if you've checked the WHAT'S NEW! section and it's a followup to something on that, or isn't there.

      Hey, I haven't quite reached 800 lb yet, though my hair has grown back in places! **joke** Feel free to ask about Brian, the gorilla, and I'll say what I feel I should.

      Firefox or Chrome are good on the PC, but I've also found for the PC laptop that the browser all PC people want to hate - Safari - works very well.

  6. I know that 'it's all right' or 'it'll be OK' are meant as a general comfort, but it irritates me to see, in a film for example, an orphan being patted down after his parents have just died with 'it's OK'. It's not OK! Well,not in the normal human sense, anyway.Sometimes we need to just be quiet with someone in serious difficulty, to allow the reality of their situation. But be there for them, in spirit always, and sometimes in person if that is appropriate. As for doing things to help, that could also be an intrusion, so it's tricky.

    My partner Michael is a great believer in not 'poor you -ing' anyone as it takes away their personal strength, and I see what he means, though when in trouble we do like to know others are aware of our fears and vulnerability too.

    Pegs, have you clicked on the 'what's new' section on Denis's blog? There he tells us just how he is doing from day to day.

    I've often seen Denis and said 'you look well'! and I think it's because I'm so delighted to see him still there!! with his lovely smile. I have also seen some effects of the drugs, and some days some limping, but he and Tracey take such good care, that actually he DOES look well, in a clear eyed, good skin tone, rested (as he says above) sort of way! I'm also aware I don't see the difficult times.

    Julie (Marsh!)xx

    1. I guess re Para 1 that people feel the need to say something, and the most reassuring thing on the spur of the moment, if anything be said at all, however trite, is something like that. It's what actions go with it that matter, as you were implying.

      'Poor you' is really no use, as Michael says, but again, it probably just slips out when a person doesn't know what to say. Extreme circumstances we're often not prepared for and anything is likely to come out in the stress of the moment. I'm always inclined to assume whatever it was was well meant.

      I take your point on the last paragraph. I'd rather have a face that didn't frighten people, even if I walk around like a drunkard at times!

  7. During the funeral reception after my mother died, a neighbour came up to me, took my hand and said, "Congratulations!" Then the horrified mortified look came over her face. Of course that's not what she meant to say. Quite the opposite. But that's what came out. I knew what she meant and so I just translated her comment in my head to what it was supposed to be, clasped her hands and expressed my appreciation for her concern. The last thing any sufferer wants is for people to be walking on eggs, worried what they might say or what they should say or what should not be said or done or thought or whatever. That's guaranteed to keep them away.

    Incidentally, months later that neighbour came back, very very interested in my father :). So maybe it was a Freudian slip.

  8. Oh heck, why did I bother writing all that for you, Julie, when Joan had the perfect answer right there! I have a memory like a sieve at the moment....


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