health

This is what sick people want to hear

A few months ago, Mamamia Publisher Mia Freedman wrote about the things you should and shouldn’t say to someone battling a dire health situation. “Everything will be OK” fell on the list of things not to say, while “no need to write back” landed on the list of things you should say.

This is a response to that article from Denis Wright. Denis is one of those sick people whom the article refers to – he has a malignant brain tumor. Denis wrote this post on his blog and it is republished here with full permission.

He writes:

“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. 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.

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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.

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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.

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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.

Denis Wright is a former historian in Asian studies, comparative religions, movie-maker and observer of the world as we have changed it. He’s now dealing with a GBM (4): the most aggressive form of brain tumour. He blogs here and aims to use the experience to try to illuminate life as well as demystify the journey.

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