Positivity Is Bullshit When You Have Cancer
November 26, 2013 4:39 PM   Subscribe

 
What kind of monster would actually tell a cancer patient that "positivity is the best medicine"?
posted by sparklemotion at 4:45 PM on November 26, 2013 [4 favorites]


What kind? A lot of "Christians" I've known. (And no Atheists.)
posted by oneswellfoop at 4:48 PM on November 26, 2013 [12 favorites]


I remember, when my wife was getting *really* sick, having family and friends visit. Family and friends that, unwittingly, were hoping she was going to be concerned, but plucky, maybe looking a little pale, smiling but tired, and insisting, "we'll get through this!"

It took only seconds with her before they realized, "holy shit, this is not like the movies, this is real, this is serious." People, before they saw her, were concerned about her hair falling out, or their "fuck cancer!" novelty items, or bringing fancy deserts for fun. Once they saw her, they realized she might *actually be dying*. The media that people see, and how it portrays cancer patients, and cancer survivors (always survivors), is not like cancer, not in real life.

My wife wanted to live long enough so that our daughter would remember her. She died last February. Our daughter was 16 months old.
posted by tylerkaraszewski at 4:49 PM on November 26, 2013 [166 favorites]


There are times when my encouragement of positivity has greatly increased the morale of someone who had breast cancer and told me so when she was cancer free...and other times where I didn't have any positivity to offer because of research on the cancer in question but I did my best to offer the support I could. Do your best to understand the situation you are in, and offer what you can, and ask for help when you don't know which path to take. Something like AskMe can help a lot on stuff like this if you don't know what to do.
posted by Drinky Die at 4:53 PM on November 26, 2013 [3 favorites]


I know a lot of women who have gotten through breast cancer through focusing on the positive. For example, the 26.2 with Donna marathon brings hundreds of these women together every February. But I get the OP, and I don't understand why we can't just let people react to illness however they wish to react.
posted by roomthreeseventeen at 4:55 PM on November 26, 2013


Why can't we let people react to illness however they want?

Because most people's last defense against gibbering madness is the just world fallacy.

Take out the positive mindset bullshit and hey, it's all just random acts of chaos inherent to an uncaring world.
posted by hobo gitano de queretaro at 4:58 PM on November 26, 2013 [19 favorites]


In his memoir about a depressive episode he suffered, William Styron writes of others’ attitudes towards depression, “[S]uch incomprehension has usually been due not to a failure of sympathy but to the basic inability of healthy people to imagine a form of torment so alien to everyday experience.”

This is so true! People who've never been truly depressed seem to think that they can understand the condition by simple comparison to the ordinary experiences of sadness, ennui, or even grief that everyone has to endure. I don't know where this came from (Tumblr?), but I was really impressed with the line "because you do not happen to suffer from depression (or, from X, really) does not mean that it is imaginary". This is something you'd think that intelligent people would realize on their own. But they don't, often.
posted by thelonius at 4:59 PM on November 26, 2013 [10 favorites]


Something I read once suggested that studies showed that the willingness of the patient to take charge of the treatment, to read up, to view themselves not as the passive recipient of the doctors' orders but as authoritative agents unwilling to take things on faith -- that that kind of independent patient apparently often has a better prognosis.

I don't think I would call that positivity, exactly, but it might be vaguely related.
posted by shivohum at 5:01 PM on November 26, 2013


The best essay on thrusting positivity upon cancer patients I've read is Barbara Ehrenreich's "Smile! You've got cancer." When you tell cancer patients that willpower and positive thinking can make the difference between survival and death, then you're also saying that some of those who haven't survived have done so due to insufficient willpower and inadequate positive thinking. This blames those victims unfairly.

The U.S. National Cancer Institute has a fact sheet on Psychological Stress and Cancer which explains what we know about the weak evidence for a link between the two.
posted by grouse at 5:02 PM on November 26, 2013 [35 favorites]


People tell any ill person that positivity is the best medicine. It's amazing--it turns out that if you just try hard enough, you can cure anything from cancer to MS to schizophrenia with a bit of positive thought. It's utterly infuriating.

It's right up there with saying that people have "lost their battle" with an illness. Like somehow, if they just fought harder, they wouldn't have died. It's an amazing bit of bullshit, and I think that we fall back on both--fighting and positivity--because we're all so fucking afraid that it could be us, and we want to think that there's something that we could do that would make us different. Something that would make us not suffer, or not die.

People don't get through things because they're focused on the positive. They get through because they're lucky, or because they have access to treatment, or because genetics. They might get through and also be focused on the positive, but optimism itself saves no one. It just makes their suffering more palatable to the people around them.
posted by MeghanC at 5:03 PM on November 26, 2013 [34 favorites]


I had cancer a few years ago, and I had a relatively easy time of it and a very good prognosis. Still, when people tell me that their life-threatening and life-changing illness was "a blessing", I want to choke them. I didn't need a "wake up call." I have always lived with the awareness of impermanence and I have made it a point not to take for granted the good things in my life.

I also have a chronic, incurable illness (ulcerative colitis). I don't look sick, even though I feel rotten a lot of the time. I don't pretend that everything's fine, even though I continue to work and continue to live my life as normally as I can. What I do is accept things as they are -- without trying to smile them away. I think that looking reality in the face is essential. Sugar coating anything just leads to mind cavities.
posted by janey47 at 5:06 PM on November 26, 2013 [13 favorites]


Positivity is a necessary component of survival. Its antithesis is not necessarily giving up and lying down to die, but negativity can blunt the drive to survive -- to continue being an informed patient and look for palliative and curative treatments, for example.

The problem with positivity is the rest of the world. Random people, facing somebody who is facing their own mortality, misinterprets this need for positivity as the ability to, by force of good mind and pure thoughts, compel your internal organs to magically heal all on their own. And that's fucked up.

The author of the essay was clearly addressing the latter issue -- not the former.
posted by ardgedee at 5:07 PM on November 26, 2013 [8 favorites]


Positivity is a necessary component of survival.

No, it's not.
posted by grouse at 5:12 PM on November 26, 2013 [37 favorites]


Why can't we let people react to illness however they want?

People should not harangue seriously ill acquaintances with bullshit just because that's how they want to react.
posted by thelonius at 5:17 PM on November 26, 2013 [12 favorites]


Our Positivity protects those around us from having to deal with our pain.
posted by Obscure Reference at 5:18 PM on November 26, 2013 [15 favorites]


The necessity of positivity = your fault if you're not positive.
posted by miss tea at 5:44 PM on November 26, 2013 [1 favorite]


Years ago I was listening to an afternoon CBC radio program (*) where they interviewed a retiring doctor who was receiving the Order of Canada for his contributions to improving patient care. It may have been been a background interview around the time that Ehrenreich's book came out, now that I think about it. His description of how patients were treated when he began his career were very surprising to me.

He gave cancer as an example. What happened if you were diagnosed with cancer in the '50s, and could afford care? Well, first you were checked into a hospital. Then a nurse arrived with a clipboard to take your complete medical history. Sounds reasonable so far, right? But the tone of the interview was something else: how often do you drink? Do you smoke cigars? Have you been eating lots of red meat? Do you eat enough vegetables? How much exercise do you get -- in other words:

What did you do, that gave you cancer.

And the accusatory questions would continue until they had determined a "cause"; hereditary and environmental factors weren't well understood back then and weren't treated as very significant. According to the radio program, it was a very blaming, very patronizing experience; look at what you've done, and why did you do this to yourself and we can't fix someone who's done this. And that's just the first day of a treatment process that was devastating to patient morale.

So as bad as it is, the shift towards excessive unfounded positive thinking can be seen as an overcorrective pendulum swing away from the kind of patient-shaming attitude that proceeded it.

* Read as NPR if you're from the south.
posted by ceribus peribus at 5:45 PM on November 26, 2013 [5 favorites]


If positivity is bullshit, being negative is probably worse to the extent that depression and related side-effects weaken the immune system, which can leave a cancer patient even more susceptible to secondary illnesses that are risks from chemotherapy.
posted by Blazecock Pileon at 5:51 PM on November 26, 2013 [1 favorite]


I think the theory behind the "be positive" mantra is that you're reducing stress... I have to admit I bought into it for a long while.

In reality, all that "be positive" just makes the sick feel worse about themselves and their predicament, like they're not doing everything they can. Better to let them have their feelings, acknowledge them and there for them however the want you to be. My response to serious illness has become something along the lines of "that sounds incredibly shitty, I'm so sorry".
posted by Pantengliopoli at 5:52 PM on November 26, 2013 [7 favorites]


If positivity is bullshit, being negative is probably worse to the extent that depression and related side-effects weaken the immune system, which can leave a cancer patient even more susceptible to secondary illnesses that are risks from chemotherapy.

The takeaway should be that you shouldn't dictate to a cancer patient how they should emotionally respond to such a diagnosis and therapy. Demanding they be positive is more about you and less about them.
posted by Existential Dread at 5:54 PM on November 26, 2013 [8 favorites]


I wish I'd been present when my dying, 28-year-old friend actually got up from his bed to tell the religious people visiting him, who'd just told him he was suffering for his sins, to get the fuck out. I understand he felt better for days.
posted by kinnakeet at 6:04 PM on November 26, 2013 [27 favorites]


"Such incomprehension has usually been due not to a failure of sympathy but to the basic inability of healthy people to imagine a form of torment so alien to everyday experience.”

Truth
posted by Bighappyfunhouse at 6:10 PM on November 26, 2013


> The takeaway should be that you shouldn't dictate to a cancer patient how they should emotionally respond to such a diagnosis and therapy.

Totally agree.

Telling people how they should feel is usually a bad idea, regardless of context... telling depressive people to cheer up isn't helpful either.
posted by ardgedee at 6:11 PM on November 26, 2013 [4 favorites]


I respectfully disagree. Frankly, if all I have to offer is an admonition to keep one's chin up and keep fighting, that is what I'm going to do.

When all is said and done, the cancered who want to live and drive themselves to survive are going to have a survival edge over those who don't.
posted by Renoroc at 6:19 PM on November 26, 2013


Thinking back to my earlier comment, "positivity is a necessary component of survival" could have been better put. Maybe a better term is fighting spirit? "Fuck this thing, I am going to beat its ass" is what I consider a positive, constructive statement (in some contexts; I don't want to hear it when I'm at a bar).
posted by ardgedee at 6:22 PM on November 26, 2013


The takeaway should be that you shouldn't dictate to a cancer patient how they should emotionally respond to such a diagnosis and therapy.

I think the general principle of respecting boundaries applies to everyone, whether or not they are sick. However, if a friend or loved one has cancer and there's something I can do to help cheer them up, I'm going to step up and ask to do what I can, if I can. Even if that means saying something just once, if they are constantly down, stepping off if the situation is appropriate. I like having my friends and loved ones around. If they are less depressed, stressed or anxious, that may give their treatment a better chance at success.
posted by Blazecock Pileon at 6:26 PM on November 26, 2013


Why can't we let people react to illness however they want?

People should not harangue seriously ill acquaintances with bullshit just because that's how they want to react.


I assumed that the initial poster meant that we should let the person who is ill react to the illness however they want - i.e., not expect them to be positive (but if they want to be, that's okay, as well). Haranguing someone with unwanted bullshit would be the precise opposite of that.
posted by Austenite at 6:27 PM on November 26, 2013 [1 favorite]


I used to freak out my New Agey friends by saying I believed in the "power of positive negativity." And it's not a joke. Being negative can be a useful strength. It makes you paranoid about details and intolerant of sloppiness. It makes you skeptical and immunizes you against all sort of hucksters and scams.

I am so very good at what I do because I never really believe anything is going to work and I'm always looking for the ways the things I make will fail. In the era when advantage play gambling was paying off our house I never really believed I was going to win a bet, and so it was always a happy surprise to verify that the math still was working.

Really, if you want to be cured of the idea that attitude affects anything a stint at professional gambling will cure you. But I was pretty negative even before that.

Trust me, you don't want your bridge designed by an optimistic engineer. You want that guy to have nightmares about every damn thing that could possibly go wrong so that when those things do go wrong, you'll expect it and have a plan.

If I get cancer I'll give it a fight if it looks like the odds are worthwhile. And I'll have a backup plan in case the worst happens -- one which I'll be prepared to execute while I can if necessary. I have a history of getting very stone cold rational in panic situations so I don't think I am kidding myself about this. Somewhere between happyland and depression lies reality, a place that might look pretty dark if you're insistent on putting on a happy face. But it is in reality where you have to make your stand.
posted by localroger at 6:31 PM on November 26, 2013 [42 favorites]


Positivity is a necessary component of survival. Its antithesis is not necessarily giving up and lying down to die, but negativity can blunt the drive to survive -- to continue being an informed patient and look for palliative and curative treatments, for example.

Hooey. I have the kind of cancer where people say, "Oh, yeah, that's the good kind, right?" Then I tell them, sure, but it killed my father swiftly and painfully. So look, I'm not positive, I'm realistic. And whatever "drive to survive" means, I'm getting the treatment I need and I know how the statistics look (orders of magnitude better for me than for my dad).

Whoops, now I see that you said you phrased it badly. But I'm under no impression I'm going to kick my cancer's ass, either. My cancer is just a little piece of me, run amok. It's it or me, yes, but I don't feel any triumph over it. I'm barely symptomatic, but if I let this go, I'll die soon and badly. So no, I just forge on.
posted by gingerest at 6:38 PM on November 26, 2013 [11 favorites]


The other aspect of be positive and fight-it-at-all-costs is the choice to refuse treatment. A dear friend of mine a few months ago chose not to go through with a bone marrow transplant and chemo. She'd been through it before without long term success; the chances of very severe side effects were very high; and for her the estimated odds of long term remission were not high when weighed against the other very negative outcomes. A very tough and upsetting decision to make for her and those around her. The fight-it-at-all-costs attitude would not advocate this. In fact, her specialist doctor basically seemed to lose interest in her as she was 'no longer fighting it' and projected a 'well what do you expect, you've got cancer' attitude to her symptoms. Fortunately, she now has switched to a great doctor who is helping her explore palliative care options as well as a form of chemo to slow the progression. She's doing pretty well and is making great use of her time left, something that probably would not have been possible if she had chosen full treatment. Sometimes, be positive and fight it is not the right choice, terrible though it can be to admit.
posted by drnick at 6:46 PM on November 26, 2013 [26 favorites]


I respectfully disagree. Frankly, if all I have to offer is an admonition to keep one's chin up and keep fighting, that is what I'm going to do.

When all is said and done, the cancered who want to live and drive themselves to survive are going to have a survival edge over those who don't.
posted by Renoroc at 9:19 PM on November 26 [+] [!]


What the hell? If you are able to say "Just fight harder! Smile! Don't get down!" then you are certainly able to form the words "I'm so sorry you're going through this. Do you want to vent?" If you have $15 to spend on a "Fuck Cancer" t-shirt, then you have $15 to spend on a movie to watch in the hospital or at home with your friend, where they can just sit next to you, enjoying it, without feeling pressured to be upbeat or play Happy Cancer Guy.

If your friend is the type to want "Fuck Cancer" gear and "Chin up" speeches that's one thing. But if they don't find it helpful or supportive, you've no right to force it on them and claim it's for their own good.
posted by schroedinger at 6:53 PM on November 26, 2013 [51 favorites]


I respectfully disagree. Frankly, if all I have to offer is an admonition to keep one's chin up and keep fighting, that is what I'm going to do.

When all is said and done, the cancered who want to live and drive themselves to survive are going to have a survival edge over those who don't.


This is seriously one of the most offensive things I have ever read on this website. Wishing for a "flag with extreme prejudice" option.
posted by lalex at 7:02 PM on November 26, 2013 [38 favorites]


When all is said and done, the cancered who want to live and drive themselves to survive are going to have a survival edge over those who don't.

Frankly, this sentence is bullshit, and indicative of more of this just-world nonsense. Didn't "win your battle against cancer?" Obviously, you didn't have enough of the drive to survive.

Cancer is a many-headed hydra. A 3rd-stage pancreatic cancer patient is in a world of trouble, whether or not they are 'positive' or have enough of the will to fight.
posted by Existential Dread at 7:05 PM on November 26, 2013 [14 favorites]


Cynics have no less a survival rate than Pollyannas. The disease sees to that...
posted by jim in austin at 7:08 PM on November 26, 2013 [3 favorites]


"Positivity" is bootstraps for illness.

Too poor? You should make yourself not poor! Too ill? You should make yourself not ill!

You'll note that both beliefs bestow all responsibility for their condition on the afflicted while coddling the believer's conviction of their own superiority.
posted by maxwelton at 7:08 PM on November 26, 2013 [27 favorites]


I respectfully disagree. Frankly, if all I have to offer is an admonition to keep one's chin up and keep fighting, that is what I'm going to do.

When all is said and done, the cancered who want to live and drive themselves to survive are going to have a survival edge over those who don't.


1. Please don't. If you don't know me well enough to know what will help, try just saying that you'll be thinking of me.
2. It's not a race, you know. And it's totally possible that there's no difference at all. Also, I get where you were going with "the cancered" but I prefer "cancer-haver". I have it, it doesn't define me. (Staying myself is a lot more important to me than staying positive.)
posted by gingerest at 7:10 PM on November 26, 2013 [16 favorites]


"Positivity" is not the thing that kept both rounds of my cancer sufficiently lazy and low-grade so that I didn't need chemo or radiation. And neither "positivity" nor "negativity" is why a friend of mine has a much more aggressive version of that cancer.

Do what helps people feel better[1], and make sure that you only ever vent outwards, never inwards. Some people need the dark bitter snark and some people need the fluffy 'hang in there' kitten. But it's whatever they need, not what someone else thinks they need.

[1] For instance, this is why I've been to Catholic mass more times this year than in the previous 5 combined - my friend is working out her relationship to religion.
posted by rmd1023 at 7:44 PM on November 26, 2013 [3 favorites]


What kind of monster would actually tell a cancer patient that "positivity is the best medicine"?

What kind? A lot of "Christians" I've known. (And no Atheists.)

Really? Because the Christians I know overwhelmingly espouse prayer if they are espousing something other than or in addition to chemo. The majority of atheists and agnostics in my experience tend to go in for "positivity" by way of meditation, yoga and/or diet.
posted by DarlingBri at 7:45 PM on November 26, 2013 [2 favorites]


Can we not bring religion into people being insensitive? Correlation is not causation, guys.
posted by OnTheLastCastle at 8:06 PM on November 26, 2013 [2 favorites]


Why can't we let people react to illness however they want?

Because most people's last defense against gibbering madness is the just world fallacy.


Which implies that arguing convincingly that the just world fallacy is wrong, is itself an act of cruelty towards those whose sanity depends on believing in it. How do we balance the competing interests?
posted by officer_fred at 8:07 PM on November 26, 2013


Maybe it's just me, but I have trouble empathizing with people whose sanity depends on inflicting cruelty on others who are already suffering, however unintentional that cruelty might be.
posted by peppermind at 8:26 PM on November 26, 2013 [8 favorites]


When my stepmother was released home from the hospital to die of a really shitty blood disease/leukemia combo platter, my father spent her final days telling her that she didn't have to "accept" the pain that she was in.

I can't think of a crueler way to treat your dying spouse. Smothering her in her sleep so her lungs wouldn't fill with fluid would have been kinder.
posted by sonika at 8:53 PM on November 26, 2013 [8 favorites]


I respectfully disagree. Frankly, if all I have to offer is an admonition to keep one's chin up and keep fighting, that is what I'm going to do.

In that case, it is very, very lucky that you, like all of us, have so much else to offer the cancer-havers of this world!

In case you ever forget that, and you find yourself reaching for that admonition as a last resort, please check to see if you can offer any of these things instead*:
- a fruit cup
- a tissue
- fuzzy slippers
- the remote control that's all the way across the room
- a smile
- to open the water bottle with the sticky cap
- jokes about the terrifying woman on Food Network
- a back scratch
- a manicure
- peace and quiet

*all items on this list were offered to and accepted by a losing-the-fight cancer-haver in my living room today!
posted by ausdemfenster at 9:21 PM on November 26, 2013 [57 favorites]


we're all so fucking afraid that it could be us

It (or some close equivalent) is nearly all of us sooner or later, but denial goes a long way in our real world here.

I hope it's much later for myself and all of y'all!
posted by bukvich at 9:24 PM on November 26, 2013


What my mom wanted when she was dying from cancer:

A cigarette (and where's the damn lighter?)

Ice cream

For the awful taste in her mouth to go away (solution: more ice cream)

To be read to

For someone to change the tape/turn the record over

To find a nice nature documentary on TV

To pet a cat

Some weed

Some more morphine

----

If you really think that all you have to offer, Renoroc, is a "Chin up!", you think too little of yourself and too little of your dying loved ones. Reconsider what you have to give. I'm certain that it's a whole lot more than a useless and potentially offensive platitude.
posted by rtha at 9:56 PM on November 26, 2013 [25 favorites]


The power of prayer or positive thinking never grew back a missing limb.

A friend's wife is locked in a nightmare of thinking that a negative attitude caused her cancer, that if she can just let go of her hang ups and eat clean enough food, she'll be ok. As the disease has progressed, it's seen as a personal a failure.
posted by bonobothegreat at 11:13 PM on November 26, 2013 [5 favorites]


I got some really bad health news this week and when I was in the reception area sobbing, another patient asked if I needed anything and started praying that God will heal me. I am super-duper religious, and I came close to screaming at her through my sobbing to shut up, just shut up. She wasn't trying to be kind, she just wanted to see herself as A Good Person who could tick off comforting the sick or some bullshit. Telling someone in pain they need to think positive isn't being helpful, it's selfish and cruel.

All of the debate above seems to be to be more about agency and control than the specific attitude - are we listening to what the actual sick person wants, are they in control? There was that great piece about how doctors choose to stop treatment earlier because they've seen the cost of "fighting" to the bitter end. People want definite answers for health problems because it makes them feel like they can control something that is fundamentally out of all our control: we all die.

And sometimes there just isn't hope. It's false hope, and that denies acceptance.
posted by viggorlijah at 11:42 PM on November 26, 2013 [6 favorites]


I think the big problem is that we call so many different conditions by the same name, "cancer." Sometimes cancer is a clear death sentence - positivity be damned - and it's sublime cruelty to challenge the sick person to smile and count their blessings and think positive and all that crap when in fact they're very much aware that their body is literally rotting from the inside out while their heart continues to beat. Every single person who's dying of cancer can think of a whole bunch of things they want to stay alive for - the son graduating from college, the daughter having a baby, or, sadly, son or daughter graduating kindergarten. They already know how much they'd like to go on living, but they also know that they're not going to. I've seen the "put on a happy face" stupid witch who shows up to the bedside of an exhausted patient and, I swear, expects them to get up and dance. I could easy throttle those people.

Every person's cancer is its own - it's in its own place, it's its own type, it's at it's own stage, it's responsive or unresponsive to treatment at its own level - just because it's breast cancer doesn't mean it's the same as your dear cousin had, it's not the same as your neighbor's lung cancer or the little girl down the street's leukemia or your friend the grocery clerk's pancreatic cancer or your sister's colon cancer. It's its own monster, and truthfully, if it's at an advanced stage or one of several more aggressive types, it's going to win - hopefully later, not right away, but it will win. No matter how hard you fight.

I took care of a woman PE teacher who got colon cancer and by the time she went to the doctor it was terminal; in her case, she didn't go to the doctor because she found it impossible to believe that she could get cancer when she ate a vegetarian, wholesome diet and fitness was her god - she did everything right, you see - cancer couldn't get her. And I've taken care of lung cancer patients who, after years of smoking, weren't surprised at all. On the other hand, I've met a five-year-old girl with ovarian cancer; she died, as did they all. What did she do wrong?

I'm sick of people who are so shallow as to believe they can bring good cheer to someone who's dying just by telling them to cheer up; if I'm the one dying, please throw those people out in the street and let me rest in peace if I can. And as one lady I know who had cancer quoted to me from someone wise, "There's a difference in giving up and knowing when you've had enough." Yes, there is.
posted by aryma at 12:03 AM on November 27, 2013 [26 favorites]


Zero evidence that a "positive" or "fighting" attitude affects survival times or rates for cancer. Zero.
Yes, subjective Quality of Life is an important factor in illness. But more "good days" =/= more days, or more days in remission.
It is true that being able to muster up the ability to make better decisions, or having an effective network of people to make those decisions and care for the patient's physical needs, helps the QoL during and after treatment. Just as it does for a temporarily able-bodied person.

I have two types of slow-developing, probably genetically-caused cancers (if a third, related type shows up, that probably changes to extremely likely). Tell me, did "bad attitude" affect my choice of parents? I have been told this by monotheists and New Age types. Some monotheists have also suggested my illness is due to my parent's bad attitudes (they called it "sin"). They weren't able to explain why I, and not my parents, suffered for whatever they did wrong (I suppose they have, since they're still married to each other...)

Telling me the best attitude to have about my illness is about you, not me. Asking me for what I would find helpful is about me, and our relationship, even if that relationship lasts a single moment.
Let me give an example. Some years ago I had a consult at Oregon Health Sciences University in Portland. It's built partly on top of a high bluff, and partly down by the bank of the Willamette River. The campuses are connected by an aerial wire tram. The news was bad. When my partner (also a Mefite) and I walked out to the waiting room, the front desk person offered us round-trip passes for a ride in the silver potato gondola. The spectacular view of the river, city, and Mt. Hood and slightly scary, swaying ride with an informative guide (the guide pointed out the top of the mikveh, as the tram goes over the pre-freeway Jewish neighborhood) did help. Yes, the office probably had this sort of bad news response several times a day. But just giving us time to look at something unrelated to illness - and even taste a little science-fact living in the future - gave us perspective.
What the staff didn't attempt was interpreting or managing our obviously distressed feelings.
Thanks.
posted by Dreidl at 12:24 AM on November 27, 2013 [15 favorites]


I respectfully disagree. Frankly, if all I have to offer is an admonition to keep one's chin up and keep fighting, that is what I'm going to do.

Frankly, if that's really all you think you have to offer, you need to think harder or ask them what would help.
posted by EmpressCallipygos at 12:52 AM on November 27, 2013 [7 favorites]


Hard to understand the view that the ill need to be admonished. Then what, if they don't respond to admonition, punish them?
posted by Segundus at 1:51 AM on November 27, 2013 [4 favorites]


Fucking Calvinists.
posted by mikelieman at 1:59 AM on November 27, 2013 [2 favorites]


I think the reason the positive attitude crew drives me crazy is that they are ordering me around. They seem to think that if I feel and act "positive" (and frankly, I don't even know what that means), my terminal brain cancer will disappear in some sort of magical whoosh.

Frankly, I'd rather have people praying for me, even though I am agnostic, because prayer doesn't ask me to participate. I even have a friend whose dad does long-distance Reiki from Atlanta on my behalf. It seems silly, but it is her family's way of trying to help.

But I have had friends who try to mandate the positive attitude, or even worse, congratulate me for my apparently positive attitude. Ugh.
posted by miss tea at 3:31 AM on November 27, 2013 [6 favorites]


When all is said and done, the cancered who want to live and drive themselves to survive are going to have a survival edge over those who don't.

My dad got "cancered" (come on, that's not even a word) five years ago. He was so brave and graceful and optimistic that it was nearly a cliché. But neither hope nor a team of dedicated doctors could save him. In the end, he was brave and graceful about death, too.

Staying positive might help you be happier or more comfortable in the face of debilitating illness or certain death, but it doesn't do shit for treating the condition. If positivity were an effective treatment for cancer, only assholes and cynics would die from it.
posted by Metroid Baby at 4:51 AM on November 27, 2013 [11 favorites]


Edit : Took out the personal attack, chin up!

Anyway I've spent most of the last few weeks in hospital and can safely say that hospital visitors are apparently made up of 70% abysmal excuses for humans. A man in the bed next to me who had been given a couple of months to live with absolutely no chance of survival had a succession of relatives tell him he should start treatment immediately. A mother visiting her terrified teenage son immediately complaining she had to skip coffee when she got the call he'd collapsed. Countless "jokes" about how selfish the patient was for being ill (seriously almost every patient I was near had at least one visitor do this, it was bizarre).

I know why they do this, I just don't fucking care. The one in the bed is the important one, grow a spine and ask them what they want.

Luckily I only had one "positive" person affliction. I explained that if they told me to smile one more time I'd die just to fucking spite them. The best nurse I had when asked if there was anything I could do whispered "basically, cross your fingers really fucking hard".
posted by fullerine at 5:22 AM on November 27, 2013 [22 favorites]


Since I fought off watching Breaking Bad for as long as I could, I'm in the first season. Just saw the episode where his wife is fighting him to take the money and begin the treatment, and he's resisting, then explains why he wasn't going to get treatment, and I think (so far) this series (and esp. this episode) have been very thoughtful about addressing these themes, about our attitudes, when to fight/accept, who has a say in these matters, how much of our feelings are due to narcism/psychological threat vs concern for our loved ones.

Which, as a society, I feel we are starting to talk about. Barbara Ehrenreich's book, as well as the recent book about how doctors address their own health, treatments, and death. This all feels in the air right now.

Those of you ill or loving ill people above, I hope for the best for you and thanks for sharing.
posted by C.A.S. at 8:28 AM on November 27, 2013


Lance Armstrong may still be in the running for History's Greatest Monster, but one of the things that I liked about It's Not About the Bike is that he makes it very clear, at the beginning, that he didn't survive his bout with cancer due to some innate superiority of his.
posted by Halloween Jack at 11:48 AM on November 27, 2013 [2 favorites]


"There's a difference in giving up and knowing when you've had enough." Yes, there is.

That's right. And it's up to the patient. Many of the comments here reflect my pet peeves. I was fortunate enough to have responded spectacularly to a treatment program for Multiple Myeloma: The usual survival curve for MM is dismal. I will celebrate the 9th anniversary of my SCT in December.

One thing this thread seems to be shy of is an appreciation of what it means to be the loved one who must watch a person live out his last days. During my three-month stay in the SCCA ward in Seattle, one of my co-patients, a quiet fellow named Larry, died. He was undergoing his 26th round of chemo-therapy. The chemo got him late one evening, while I was wandering the halls in what passed for my daily exercise.

RedBud (Mrs mule98j) told me about it later. I was wrapped in a chemical fog at the time, and had little awareness of anything more than a few centimeters from my skin. RedBud was well-served by the staff at the hospital. They had organized a peer group of care-givers, family members (of the patients on my ward), and talked with them about how the survival curve works for the terminally ill. This gave them, RedBud told me, a sort of template that helped keep them from being too surprised when the decision trees crept out to their inevitably fatal branches.

My world had collapsed around me. It would be some months before I began to react with any semblance of awareness to the needs of those around me. Basically, for a while I just didn't care about anything except keeping food down. Coming out the other side of the fog, my survival curve at the time showed MM patients dying off a the rate of 90% per five-year interval, with mean remission time being 48 months. In other words, after three or four years I could look forward to some last-ditch treatment programs, desperate field trials, and then a stint in what they call palliative care. Palliative care is a deceptively alliterate term for basically ugly process. In this context, being drugged up for a few months then dying was the silver lining to my particular cloud.

RedBud lived under this sword every day and every night that I did.

Those closest to the patient, especially the care-givers, need to be handled with as much support as possible. In my case, I was able to reduce RedBud's burden a tiny bit on account of how death doesn't scare me any more. This where the beneficial aspects of positive thinking can come into play. Not the fantasies of magical cures, but the realities of functioning in a diminished capacity. I am not yet ready to die, and I will go out with extreme reluctance, although I will try to maintain a certain dignity in my passing, mostly to ease this process as much as I can for RedBud. As it turns out, I may be lucky enough to have geriatric issues kill me before the MM does. So be it. But if remission failure happens, then I'll probably make the same choices Larry made: take chemo until I've had enough. If the chemo doesn't get me, I'll look into palliative care. I'm thinking that going out with a quiet sigh is better than going out with a bang or a whimper.

I have an excellent health care program, through the VA. I'm alive now because my cancer is an Agent Orange event, and therefor covered by my term of service. Had I been the average middle class person instead of a veteran with a service-connected disability, my insurance would have lapsed long ago. Our modest nest egg and our house would have been escrowed into the bills accrued during my stem-cell transplant. Or else my house wouldn't have been enough to cover the SCT, and my doctors would have been required to select other, less expensive, perhaps less effective, treatment options. How about them apples?

So, this week I'll be at my in-laws for Thanksgiving Dinner. Guess what I'll be thinking?
posted by mule98J at 11:50 AM on November 27, 2013 [17 favorites]


I've never had cancer, but like janey47 upthread I have ulcerative colitis. I have ulcerative colitis so severe that I had my colon removed and my GI tract rebuilt in a series of three major surgeries.

Moreso than merely forced positivity, I believe that our culture does a massive disservice to patients suffering from illness by using "warrior", "fighter", "battle", and similar vocabulary to describe the way we engage with our diseases and our treatment. By falsely assigning agency to our "fight" against a disease, we introduce tremendous additional stress on the patient to fight hard enough. While that myth of agency gives false hope and reassurance to patients and especially to their loved ones, ultimately it dooms all but the luckiest patients to believe that rather than being at the mercy of the dumb and twisted luck of disease, they have somehow failed.

This topic is particularly close to my heart because in the community of sufferers of ulcerative colitis, opting for surgery is frequently described as "giving up" or no longer "fighting" to "save your colon". At a time when patients are often at their most ill and their most emotionally vulnerable, this bullshit culture tells them that they have failed and they have given up.

I am all for celebrating folks who have been through tough times. But you get through it with science, with care from professionals and family and friends, with medicine, with surgery. "Wanting it" has nothing to do with it. And sometimes you have all of those things but you don't get through it. When are we going to admit that the flip side of "fighters" is disparaging the dead?
posted by telegraph at 2:45 PM on November 27, 2013 [13 favorites]


When are we going to admit that the flip side of "fighters" is disparaging the dead?

As I've posted before, sometimes using the language of "fighting" cancer is a way of respecting the loved ones who are now gone. My mother spoke pretty consistently in terms of "fighting this goddamn disease" during the seven years she spent in treatment for the cancer that eventually killed her. When I make reference to my mother fighting cancer, I'm doing so with the intention of respecting and honoring her experience.

As I read it, the point of the FPP is that it would be better to listen to the people with cancer as far as what their experience is, whether the rest of us find that pleasant or palatable or anything else. You're the one with the diagnosis? You get to decide how you talk about it, IMO.
posted by Lexica at 4:33 PM on November 27, 2013 [5 favorites]


[PSA: don't do content edits, please, even if you do them with every good intention.]
posted by jessamyn (staff) at 6:23 PM on November 27, 2013


I would like to point out that there are some Christians (perhaps the marginal few on the extreme margins, I'll admit), who are able to respond sanely and perhaps even with some deep sense of compassion (which is what Jesus was all about, really), to the sick and dying - of cancer or anything else.

My mother raised my 5 siblings and I in our Christian household, and while I don't have a overwhelming amount of positive memories, this thread in particular has made me remember my mom's friend, Angie, the mother of my sister's best friend. Angie had 4 kids of similar ages as my siblings, and so she would have been roughly my mom's age (mid 30's) when she was diagnosed with a tumor wrapped around her spine. My mom's dad was a neurosurgeon, and while not a cancer specialist, often consulted in cases of this nature (brain and spinal cord neoplasms). So of course, the first thing she did was get him to review her case. He compassionately concurred with her physician's diagnosis that she had 6-12 months at the long end.

Nobody told Angie to buck up. Frankly, how do you do that to a mother of 4 kids that has just been told by the best doctors around that she's dying? What people - Christians, her friends from church - did, was what any normal people do. It's the same thing Mrs. allkindsoftime and I did for our friend Brandon and his family when he recently had a brain tumor removed - we started coordinating who would cook meals for the family, and then found a meal service that the family approved of to provide for them thereafter. People started watching Angie's kids when she needed to go to the doctor. They certainly were welcome to spend any and all nights at our house, and they spent many there. People came over and helped Angie keep the house clean. People ran her errands for her. And yes, people prayed with her. But hell if I remember anyone telling her to stay positive. That isn't to be found in the Bible, far as I know.

Probably most Christians who are not Pentecostal de-emphasize the importance and power of prayer for the sick. This is surprising given that so much of Jesus' ministry was focused on healing the sick, rather than telling people how to live a pious life or that they are being punished for their sins. But we are human, we are very forgetful. My mom and her friends weren't, though. In addition to caring for all the immediate physical needs however they best could (as did Jesus), they then spent serious time in prayer for Angie, both with her and away from her.

Here's a funny thing about that. My mom had us do devotions each morning, and after Angie got the news, mom sat us down for devotions and explained to us that Angie was sick and wasn't going to live very long. That our friends were going to lose their mommy. We were of varying ages so this was the first time for I think all of us that we had to try to comprehend something like that. We closed devotions by praying for Angie, and my sister started praying that Angie would get better. Afterwards, mom told her that we needed to pray about how we could help the family, and that the family would be comforted, etc. etc. etc. - basically trying to help my sister understand that Angie was dying and perhaps we had to be a bit more practical in our prayers.

13 years later we were still praying for Angie in our devotions, when she finally passed - after numerous re-bouts but many more welcome years seeing her kids grow up and, thankfully, get to know their very strong mother.

Anyway, whether you believe in Jesus or the power of prayer or a big spaghetti monster or reincarnating as a lemur or just nothing at all after you die, the point is that there are a whole lot of us out there going by a whole lot of different beliefs and monikers and whatnot, and each and every one of us are certainly capable of being kind and compassionate to those stricken with the horrible disease that cancer is. It's our own humanity that stops us, sometimes, sadly. But then, funnily enough, it's our humanity that helps us do the right thing too.
posted by allkindsoftime at 7:09 PM on November 27, 2013 [9 favorites]


I have just dropped into Mefi after being away for a while. I read a few threads and thought "Why have I been away so long?"

Then I came here. How shall I put it? Some of you are not at all the nice people you think you are. (Nor as logical -- what other causal connection might there be between being really sick and low spirits?) Your actions are not kind, and unintended damage to a sick person's self-esteem is still damage. But many of you are absolutely great! I particularly like localroger's point that believing everything is going to go well is very likely to be bad for our health -- I have certainly benefited from some double-checking of the actions of professionals.

One practical tip: Offering specific kinds of help makes it easier for someone to ask you for help, compared with a general offer. "You know you once said you might ...."
posted by Idcoytco at 2:21 PM on November 28, 2013


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