Do most people really want to know how you're Really doing?

Posted by fritzo @fritzo, Jun 20 7:03pm

OK, I'm doing it again. Thought Hans brought up some good points about how most people who know you have cancer actually don't really want to know how you're doing...they want the heroic answer that makes them feel better.

He has some retorts to the question that probably do trigger people. It reminds me of my son-in-law, who when people asked how he was doing, would say with great intensely, "Great!" The catch was that you didn't know if he meant great in a positive way or meant it sarcastically. It would definitely would stop you for a second.

Anyway....another link to Hans column and a graph from it....

“The truth, I have come to believe, is that much of illness in modern society is performative. We have collectively agreed that sick people should remain inspirational because actual suffering makes everybody terribly uncomfortable. Nobody wants honest illness. People claim they admire bravery, but what they really admire is tidy suffering, suffering that smiles politely, expresses gratitude, posts optimistic updates on social media, and generally avoids introducing unpleasant realism into brunch conversations.”

The Curious Performance of Being Fine
https://open.substack.com/pub/nutmegphantasy/p/the-curious-performance-of-being-dbf

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Profile picture for lsk1000 @lsk1000

For the most part, I view issues about health similar to money. The less said the better. Who ought to know all the sordid details? Me, my wife and I. Parents and siblings get a summary. Friends get a brief glimpse; they don’t really know how bad things were or could be, and I avoid mentioning it when we get together. My goal is to bury my health issues and have them view me as healthy. I don’t want to be stigmatized. Does anyone but my wife know I’m incontinent and wear a clamp and pads? Hell No! Does anyone know I’m impotent? Hell No! If asked how I’m doing…..I’m doing “fine” when I’m honestly doing fine.

FYI: It should come as no surprise I didn’t relate to the Hans article. He seems bitter and far too focused on his illness.

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@lsk1000 Oh yeah, candidly, lots of my friends actually do NOT want to know any of the sordid details. You find out which friends have capacity for this stuff and which are just hang-out buddies.

Besides, your business is definitely your business.

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Profile picture for jayhall @jayhall

My standard answer is "I'm not dead yet".

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@jayhall I like that. It's disarming and direct...probably depends on your delivery how it's received.

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Profile picture for TurtBean @turtbean

I know we all have different philosophies regarding sharing. I tend to overshare, specifically to address the stigma that’s associated with it.

Everyone I know, if they ask and I have the time, gets a complete rundown of my bladder habits, sexual function, and whatever else is or will be going on (I’m fortunate right now in that all I’m dealing with is incontinence and ED).

My feeling is, if I’m hiding it, I’m feeding that Shame Monster. There should be nothing to be embarrassed about in having to wear “protective undergarments” - my niece, who routinely works with older folks in her job as a geriatric studies professor, taught me that phrase: “Don’t say diapers! You’re not a baby!” Gotta love her!

I own it. My family knows, my coworkers know. HR knows. My neighbors know. Hell, my hair stylist knows (and she’s been a rock of support, believe it or not). I’m loud and proud about it.

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@turtbean Would love to be free enough to go full disclosure with everyone. But, not my style to overshare with everyone....just those I trust.

I'm early in this game (two-months post surgery), so guess I'm gonna see what where my post surgery side-effects finally end up.

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Profile picture for carbcounter @carbcounter

I'm happy if the doctor seems fully concerned, but he's getting paid for it.
*
As we age there are more and more of our friends and relatives who have medical situations they're going through ... and as we go through our own. I have two old friends right now going through it, and one friend's wife too. I'm on this group because I'm curious about his PC, as he was exhibiting side effects of the treatments. We seem to have a balanced view of what he cares to share and what I can stand to know. The other and his wife are both going through other kinds of cancers, actually, and as far as imminent danger and detailed treatments, have far more to say. If they published ten-page summaries daily I might read them, but y'know, there's nothing I could really do about any of it.

All three seem to be handling their situations very bravely, and I hope if and when I'm in similar shoes I can do as well.

So I just try to be supporting, and if they want to talk about it I hope I can be a friendly ear.

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@carbcounter That's the hard thing about getting older. Nature takes its toll on those we care about. But, there you are, ready to be supportive. And, candidly, most patients don't want advice, they really just want a friend ear. Props to you!

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Profile picture for dpayton @dpayton

@fritzo

For sure Fritzo! I tend not to tell younger folks as it just scares the hell out of them more than anything else. And like you say, if it's family I will. But I always ALWAYS try to spread the positive side of things.

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@dpayton My take with younger folks is that it just freaks them out...so why go there.

I am the big PSA test advocate guy now. What's worst than having cancer? Not knowing you have it. Get on it early people!

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Profile picture for survivor5280 @survivor5280

I think the read on it can go a lot of different ways, to pigeonhole it into a single way is ignoring the many different types of personalities.

• Perfunctory response. They say it because it's expected, in their mind, to inquire as to your well being. The answer is often inconsequential or at least they may not want to know the truth.
• Unsure what to say. I think a lot of people are genuinely interested in your well being but just don't know how to ask if you are nearing death using any other language than this.
• Awkward conversation. People who are not normally good at idle conversation might use this as an opener because no matter what you answer leads to a conversation. I think they are genuine in their inquiry.
• I'm your bestest friend of all your friends. These folks seem to hammer you incessantly with the question because they want to be the first to be "in the know" and "by your side" before anyone else. I know a handful of people like this. I'm unsure if they care more about you or being top of the heap.

People are people. Funny thing is that, now 18 months post RARP, I rarely get asked it any longer. It's like they feel if you don't show any visible signs, haven't brought it up yourself or enough time as passed then you are fine, all done.

Truth is that I generally don't want to discuss it with anyone who wasn't part of it from the beginning. If I run into an old friend, I'm not leading with that - and, in fact, I don't mention it at all. "How have you been, I haven't seen you in two years", to which I reply "Ups and downs like everyone, how about you?".

This is my second cancer in 15 years, I feel this summarizes it accurately in both cases so I feel like it might just be how people are - one of those four types.

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@survivor5280 Well put, but I think there is one more type. Those who truly care. They have lots of empathy. Sometimes it's gained from their own life experience. I've also found people who truly just care about others. But yeah, seems like a good place where people just don't inquire anymore because it's old news. No drama is good news in my book.

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Profile picture for northoftheborder @northoftheborder

@turtbean I agree. I don't think anyone should feel pressured to share, but if you feel strong enough to share, you're making it easier for the next person. If enough of us share, some day there will be no stigma around this stuff it all (it will become "normalised", as the sociologists say).

As long as our disease and its symptoms are hidden in the shadows, we're signalling to the world that they're somehow shameful.

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@northoftheborder Yeah, but ED and incontinence are not your normal social party chit-chat. Guess we just need to find the right crowd.

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Profile picture for chippydoo @chippydoo

@northoftheborder Nothing shaming about having cancer. Even reproductive cancer. Interesting how talking about something that is uncomfortable can lead to shame reduction for either party.

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@chippydoo You know, I think the concept is like how med students get used to blood, body fluids and the goo that makes up our insides. It's a lot at first, but then it becomes old-hat and you don't give it a second thought.

Talking about "reproductive" cancer should accomplish the same goal-good thought.

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Profile picture for jim18 @jim18

@fritzo Smart move. In most places that would put you near the top of the layoff list. HIPPA prevents your management from knowing much about treatment even if using work insurance to pay for it.

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@jim18
" In most places ..."

Yes, most places in the USA : (((.

In Austria and Germany, for example, employer would go to court for that and have serious fines because of very strict labor laws. Only if patient is terminally ill or will be permanently disabled there would be so called initiation of dismissal but worker would have a compensation for life and in amount that is almost the same as was the salary.

Interestingly the same applies for USA companies that have their offices in Germany ! Workers in Germany have those same protections while workers in the same company in the USA have none in those circumstances : (

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Profile picture for fritzo @fritzo

@northoftheborder Yeah, but ED and incontinence are not your normal social party chit-chat. Guess we just need to find the right crowd.

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@fritzo Yeah, definitely choose your context. Earlier on in this thread, people wrote that they were concerned about sharing the fact that they had prostate cancer because they were *worried* people might start thinking about ED and incontinence; that's a lot different that walking into a room and shouting out "Hey, everyone, I have ED!!!"

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