Smile! You've got cancer
August 10, 2016 9:01 PM   Subscribe

Cancer is not a problem or an illness – it's a gift. Or so Barbara Ehrenreich was told repeatedly after her diagnosis. But the positive thinkers are wrong, she says: sugar-coating illnesses can exact a dreadful cost
posted by neworder7 (77 comments total) 62 users marked this as a favorite
 
I've been aware of Ehrenreich's writings on this topic for a while now, and I fully agree with her. If one truly does feel that a positive outlook is helpful to oneself in such an ordeal, then great, but having that pressure applied by external parties is corrosive and dismissive to the patient's true emotional needs.

Or as Ehrenreich writes much more eloquently:
Who would begrudge the optimism of a dying person who clings to the hope of a last-minute remission? Or of a bald and nauseated chemotherapy patient who imagines that the cancer experience will end up giving her a more fulfilling life? Unable to actually help cure the disease, psychologists looked for ways to increase such positive feelings about cancer. If you can't count on recovering, you should at least come to see your cancer as a positive experience.

But rather than providing emotional sustenance, the sugar-coating of cancer can exact a dreadful cost. First, it requires the denial of understandable feelings of anger and fear, all of which must be buried under a cosmetic layer of cheer. This is a great convenience for health workers and even friends of the afflicted, who might prefer fake cheer to complaining, but it is not so easy on the afflicted.
As a male cancer patient, I never had to face the overwhelming pressure to be upbeat; no one ever told me to be upbeat or positive, no one told me I couldn't be depressed or pissed off. I suspect that this has a lot to do with gendered expectations of emotional labor. Women suffering from cancer are expected to put on a brave or happy face, so that their loved ones, friends, and acquaintances don't have to work very hard to help a suffering friend through a difficult ordeal. The Susan G. Komen pinkwashing ad and merchandising campaigns reinforce this.
posted by Existential Dread at 9:43 PM on August 10, 2016 [151 favorites]




I'm so glad she's out here doing her thing. There is absolutely a fetishization of positivity in our US culture and it's sick and dangerous. And it seems to pop up everywhere. I notice it all the time. It corrupts actual positivity because when you ignore reality then nothing really means anything.
posted by bleep at 11:03 PM on August 10, 2016 [45 favorites]


I link much of this to Louise Hay and her simplistic explanation of health issues and blame the victim BS of the 1980's... I wish the whole concept would die. It really bugs me.
posted by cairnoflore at 11:04 PM on August 10, 2016 [7 favorites]


I couldn't think of anything more natural than to be upset and angry that you've got cancer! Why the heck would your initial or even later reactions, be one of positivity?

I read this and was instantly reminded of the messaging infertile couples, especially women, seem to receive. Think positive thoughts and don't stress and it will just happen! And if it doesn't, and you don't fall pregnant or beat your cancer, well, you're clearly JUST NOT POSITIVE ENOUGH. I clearly would make a very bad cancer patient. Thinking of anyone currently suffering. I would send positive thoughts, but well, you know.
posted by Jubey at 11:05 PM on August 10, 2016 [12 favorites]


When my mother was dying of cancer, I sent her The Anatomy of Hope, which, from what I could tell from interviews and reviews, also talked about how expecting cancer patients to be hopeful and optimistic and strong was unfair and counterproductive. I think she took the gift, from the title, as one more person telling her to be hopeful and optimistic and strong. I'm not sure I regret the gift, because I think the intention and the actual content of the gift were likely good, but I should have set it up better.

I always think of an internet forum I was part of at the time, when a cancer survivor shared that when she was going to chemo, an acquaintance yelled, "Be brave, Amazon warrior!" And she shared how stupid and uncompassionate a comment that was. "Be brave, so I don't have to be scared." "Be brave, so I don't have to be sympathetic." "Be brave, so I don't have to feel."
posted by lazuli at 11:07 PM on August 10, 2016 [61 favorites]


from the article: It was apparently a short leap, for many, to the conclusion that positive feelings might be the opposite of stress – capable of boosting the immune system and providing the key to health, whether the threat is a microbe or a tumour.

I think that studies about stress reducing some immune functions really did make a lot of people make that leap to thinking that 'negativity' is the cause of all bad things...including cancer. I had a friend who I actually considered intelligent refer to someone as " an angry person, a cancer personality". Susan Sontag was told when she had cancer that it was because she was 'too angry'. I agree with Existential Dread; I think people think the universe punishes angry women.

And the Deepak Chopra quotes about doing positive work until the cancer is gone for good, Jesus I can't believe that man has a medical degree.

Aside from the sexism of expectations of upbeatness, I think it's also going beyond just encouraging resilience and it's about trying to maintain a sense (or illusion if you will) of control in a universe where we don't always have control. It's as if we can't have a middle ground where we can tell people, in so many words, " yes this circumstance sucks ass but try to be as resilient as possible because it's in your best interest to bounce back (ie job loss, divorce, etc) and not go into a downward spiral. But I'm so sorry you have to go through this awfulness, how can I support you?"

It's like we want to put all the onus on the person struggling in saying they're not positive enough. It seems to me that survivors should know better.

And finally, not to be snarky about a serious thing, but my very positive sister-in-law succumbed to ovarian cancer two years ago. She was positive almost up to the end in which, after 12 long years, she finally said in exhaustion, "I hate my life". I think she had been holding that back for a long time, lest she be accused of letting the cancer win.
posted by GospelofWesleyWillis at 11:09 PM on August 10, 2016 [30 favorites]


This made me think of Dr. Gabor Mate and his book When the Body Says No, which argues that it is not what we typically think of as stress that causes illness but rather the stress caused by repression of negative feelings.
In his latest book, When the Body Says No, he goes out on a medical limb with his passionately-argued thesis that certain types of chronic disease can be triggered by stress. And not the garden variety stress we usually think of (the job, the kids, the mortgage), but internal stress generated by the repression of powerful emotions, particularly anger.

In his many years as a palliative care physician, Maté observed in his dying patients certain eerie similarities in personality. Many of them were cheerful and agreeable to a fault, never seemed angry, placed everyone else's needs above their own, and were harshly critical with themselves. Their personal boundaries seemed fragile and uncertain, as if they did not know where they left off and others began. In many cases, it was nearly impossible for them to say "no," to the point that their bodies had to say it for them.
So not only is this enforced positivity unhelpful, it's actually harming people's health, if Mate is right. And it might explain why certain chronic illnesses are more prevalent in women, who are discouraged from expressing anger and expected to be cheerful and self denying.
posted by hurdy gurdy girl at 12:27 AM on August 11, 2016 [26 favorites]


I dunno. That seems like it's as much victim-blaming claptrap as the opposite is. It's not like dying is a thing that only happens to a particular kind of person. Everyone dies, whether they're positive or negative or somewhere in the middle. It's not something you can prevent by having the right personality.
posted by ArbitraryAndCapricious at 12:44 AM on August 11, 2016 [41 favorites]


Another destructive element of positivity is 'fight at all costs'. A dear friend of mine made the hard choice to decline treatment when she had a third recurrence of Hodgkin's lymphoma 3 years ago. The odds for her of recovering if she went through the chemo treatment were not very high, and the likelihood of the treatment having significant adverse affects, even death, were high. When she explained her choice, her first doctor lost all interest in her and would say things like "well of course you're getting symptom X, you've got untreated cancer." The implication seemed to be if you're not going to fight it, there is nothing he could/would do. Fortunately, she found a good doctor who understood her choice and helped her with palliative care to ease any pain and keep her mobile. She then had a pretty good 18 months with friends and family before she left us. I think she made the right choice, though it was hard to accept initially.
posted by drnick at 1:03 AM on August 11, 2016 [58 favorites]


I dunno. That seems like it's as much victim-blaming claptrap as the opposite is. It's not like dying is a thing that only happens to a particular kind of person. Everyone dies, whether they're positive or negative or somewhere in the middle. It's not something you can prevent by having the right personality.

Yes, that's been some of the criticism of Mate's thesis--that it is victim blaming. I can see that, and it would certainly be shitty to basically say, "Hey, if only you hadn't been so unable to put your own needs first and not repress your anger, you wouldn't be here in palliative care!"

But I can also see a reading of it acknowledging that some of the burden of emotional labour can negatively affect women's physical as well as emotional health.
posted by hurdy gurdy girl at 1:07 AM on August 11, 2016 [8 favorites]


But, despite all the helpful information, the more fellow victims I discovered and read, the greater my sense of isolation grew. No one among the bloggers and book writers seemed to share my sense of outrage over the disease and the available treatments.

This reminds me a lot of some of the conversations I had with my mum in the later stages of her cancer. A lot of what she wanted to talk about was her fear and anger about her death. Yet surprisingly few people were willing to talk to her about those emotions, much less talk with her about the practicalities of holding the family together without her. I do think that dad tried to have those conversations, but he was distressed to the point of making himself unwell, and I get the impression that she had few outlets where she could openly talk about how she felt. I like to hope that some of the time she spent talking with us kids helped, but I really wish that the rest of the world had been able to be a little bit less shitty about the "you've got to stay positive!" thing. I totally understand why some people want to be upbeat, and would never begrudge them that, but I really wish it were more acceptable just to let a dying woman be angry if that's what she wants.
posted by langtonsant at 1:25 AM on August 11, 2016 [19 favorites]


Cancer is cells that have gone wrong and reproduce uncontrollably. It is not caused by your emotional state nor can it be stopped by your emotional state, any more than you can grow yourself an extra leg by thinking more leggily.
posted by Segundus at 2:45 AM on August 11, 2016 [59 favorites]


This is like life imitating the darkest satire..
posted by yoHighness at 2:53 AM on August 11, 2016 [2 favorites]


There may well be benefits that come from optimism, and there does seem to be evidence that state of mind influences medical outcomes somewhat. That shouldn't really come as any surprise: the brain is part of the body, and emotions have all kinds of physiological effects, some of which will affect how you body handles an illness. There's nothing particularly 'woo' about the idea.

But inevitably, that call for positivity is being used by doctors, self-help authors, and the families of people with cancer as a way to escape having to deal with their own feelings as much as the patient's own feelings. It's a convenience. Nobody really wants to have to be there for someone getting emotional and bleak about possibly dying soon. That's a massive load of emotional labour. Much easier to have everybody skirt around the issue and smile and mouth platitudes; better still if the patient will play along with the game.

For some patients (my father, before he died a few years ago) that works; maybe they're not the sort who ever want to share strong emotions. We made it pretty clear to my dad that those difficult conversations were OK to have, but he chose to be outwardly upbeat and always shut down any discussion of his illness or treatment. That was his choice, and ultimately we had to along with that. I think he just wanted to be remembered for who he was, and not for what was happening to him.

If we want to move forward and use the 'power of positivity' to help in the treatment of cancer and other illnesses, we have to grasp that fact that it's not a band-aid; you don't choose how you feel. You have to deal with the emotions that are there. You have to have a space (if you want it) to rant and shout and cry, and generally be bloody awkward. Sometimes you have to hit an emotional rock bottom before you can start climbing out. We can't superimpose one set of emotions on top of another; coming to terms with the illness is a journey, and a lot of that journey is probably going to be rough. Positivity, happiness, calm acceptance - those things are desirable outcomes for everyone, but you don't get to those places by dictating how someone should feel, even if it's 'for their own good'.
posted by pipeski at 3:06 AM on August 11, 2016 [11 favorites]


I think something some people have wrong about "stress" is they are thinking of it as an attitude but what a lot of the research would more clearly refer to is essentially harmful environmental exposures in ones past. Like I have seen some research (and especially reporting on such research) refer to past history of divorce, moving, childhood abuse, childhood poverty, etc etc the list goes on as "stress".

What such studies are measuring is not ATTITUDE- it's that damaging experiences are damaging and cumulative.
Exposing rats to frightening experiences of predators or being held in one place or removing them from their mothers at young ages is referred to as "stress" but again what they are measuring is not whether the rats were meditating enough during these experiences but that denying basic needs for safety and protection and care, and abusing people or animals produces emotional and physical reactions of damage then and in later generations.

I'm not knocking meditation or finding hope for those who want to- but there was even a rather excellent take down of such practices by philosophers of India telling everyone to ignore desires and be happy with nothing in Hinduism and Buddhism being linked with classist rule against the poor. MAN I WISH I COULD FIND IT. Something about it really did coincide with a lack of support for the poor and an entrenching of acceptance of leaving people in such conditions. ---- ok I looked and looked but can't find it again, but at least I know I'm not alone in suspect a lot of the "solution to suffering is to stop having desire to exist at all" crap is considered harmful by others than just me-- and some of those ideas do get shoved on the sick and the vulnerable through new age "healing" quotes and such.
posted by xarnop at 5:13 AM on August 11, 2016 [12 favorites]


I chose to name my tumour. Desmond. Fnck Desmond. And fnck attitude policing.

I was always pleased my doctors said attitude could only get me to the theatre door. The rest was up to them. And it was true. I relaxed in to their care and did what I was told. And didn't google till I was given the all clear. And fnck. I'm glad I didn't. I'd have had the worst attitude ever. In a foetal position in a cave, crying.
posted by taff at 5:14 AM on August 11, 2016 [28 favorites]


There was a fantastic story arc in the 80s tv show Thirtysomething that dealt with this. One of the characters on the show was diagnosed with cancer and joined a support group only to quit once they decided that they didn't want to see their disease as an opportunity to raise their consciousness or embrace new experiences. They just wanted their dreary life back.
posted by Beholder at 5:19 AM on August 11, 2016 [6 favorites]


As Americans if it doesn't involve working for our employers or buying things from other employers, we really aren't allowed to do much. We aren't even allowed to be sad in this country anymore.
posted by gehenna_lion at 5:23 AM on August 11, 2016 [20 favorites]


Sadness interferes with working for your employer, but at least it's an opportunity to buy things from other employers.
posted by I-Write-Essays at 5:55 AM on August 11, 2016 [5 favorites]


I had breast cancer last year. Yeah. This is accurate.

But I'm sorry for her that she had bad experiences with other patients, because I've found that it's largely people who aren't going through it who slap the pink ribbons on their cars and talk about the power of positive thinking. In my online group of women who all started chemo at the same time, there is a great deal of anger at the way breast cancer is portrayed and treated by society, and especially at Komen and their pink machine of peppy "awareness." The women I know agree almost universally that the main thing we learned from getting breast cancer is that everything about having breast cancer fucking sucks.
posted by something something at 5:58 AM on August 11, 2016 [20 favorites]


Oh, I found a guy in a support group for my kind of tumour to LOVE his label. I wanted to throttle him. It was deeply unsettling and I had to remove myself. Some people relish their cancer. Like the hypochondriac that finally has "earned" a reason for sympathy. Made my skin crawl.

I want sympathy for paper cuts, shitty children, insufferable hangovers, and period pain.

I did not want sympathy or celebrations or happiness or inspiration ( or t-shirts. I swear to god, the guy had t-shirts made. I kid you not.) for wondering how long I've got and if it is going to be a terrible end. Or for all the hate and rage and fear and impotence and paralysis and sadness... And I didn't want a frickin' tra la la la la t-shirt with "I have cancer, cancer doesn't have me" on it.

/desmond left the building. Uh, seems I'm not quite over him yet. Fnck him again.
posted by taff at 6:40 AM on August 11, 2016 [17 favorites]


As a male cancer patient, I never had to face the overwhelming pressure to be upbeat; no one ever told me to be upbeat or positive, no one told me I couldn't be depressed or pissed off.

Hmm. That's funny because (although not a cancer survivor, though definitely affected by cancer through close family losses) my experience has been exactly the opposite. My feelings as a man get ridiculed and dismissed on the basis of my gender identification pretty routinely, with chiding to "man up." I'm surprised that's not a universal experience; I've frequently seen it done to others, too.
posted by saulgoodman at 6:41 AM on August 11, 2016 [2 favorites]


I loathe the optimism ideology.

Always try to make the best of your circumstances in life? No argument there. Though I suggest that it is hardly particularly novel, insightful, or helpful advice.

Beyond that, heading into blame-the-victim territory, it rapidly becomes nasty delusional cowardice.
posted by Pouteria at 6:42 AM on August 11, 2016 [2 favorites]


Very accurate, and I say that as someone who is generally quite positive and have remained so thru much of my cancer diagnosis and treatment. I have come to loathe being called brave or strong, because it gives me no space for shouting "THIS SUCKS I WANT MY BODY BACK YOU INVASIVE MOTHERFUCKER" when I am having a bad day.

I have avoided other patients/support groups because I've been afraid I'll only encounter pink ribboned walk-for-lifers. It's often lonely, but it would just be the last goddamn straw to seek support and only find fluff.
posted by donnagirl at 6:43 AM on August 11, 2016 [13 favorites]


Barbara Ehrenreich is a national treasure. Props to all of you who have dealt with and are dealing with cancer. Ugh, I can't even imagine. Virtual hugs.

xarnop if you find that article that is a take down of the "solution to suffering is to stop having desire to exist at all" crap -- I hope you will share it. I would love to read that!
posted by pjsky at 6:48 AM on August 11, 2016 [1 favorite]


Mine was metastatic melanoma that was diagnosed waaaaaaaaay late at stage 4 after it hit basically every organ between my neck and groin. If that's a gift...

1. I wish the giver would have supplied a receipt so I could return it.
2. It's the gift that can't be fully utilized without accessorizing it with radiation and chemo.

People who think that it's a gift should really experience it for themselves. The fun that is a biopsy or multiple biopsies if the first rounds of pathology are inconclusive. The fun of radiation - feeling like you have an 8th degree sunburn on the inside of your body, and the scarring that results from it. Or the weakness that feels like you can relate to Superman when he's exposed to Kryptonite. The thrill of waiting to see if you can get randomized into a clinical trial, and if the answer is no, then you have zero options left other than which hospice to go into.

People who think this shit is a gift need to be punched hard and repeatedly. You know what the gift was? Merck. They developed the drug that saved my ass at what was basically the 11th hour.
posted by prepmonkey at 6:53 AM on August 11, 2016 [56 favorites]


My wife's cousin--an elementary school teacher, Evangelical Christian and a woman who, literally, does not leave her bedroom in the morning until she has put on her makeup--was diagnosed with cervical cancer a couple of weeks ago. As soon as she was diagnosed, her former students and church members started visiting en masse. It's great that they want to support her, and I'm sure she does find it comforting, but I can't help but think that it's also a huge burden to have to play host to so many people at such a time. Talk about having to do the emotional labor for others at the worst time.

Her Facebook posts have been full of "I'm blessed.." statements. Nary a negative word to be found.
posted by tippiedog at 6:59 AM on August 11, 2016 [4 favorites]


This is sort of close to home at the moment: my sister-in-law has just been given the "consider how you want to live the next few months, which will almost certainly constitute the remainder of your life" talk, with chemo labelled a dim, dark, distant hope instead of an obvious decision. Don't get me wrong: I deeply appreciate the honesty of the surgeons/specialists about the depth to which the disease has descended, and even the offer of a vague (1 in 20) estimate of the likelihood of chemo providing a significantly longer life (albeit with an infinity of attendant side-effects, of course...)

Along similar lines: some of you might remember my older brother, who travelled by the name "wolof" on here. Wolof (Mark) died from cancer a couple of months back now: it's fair to say that the way-too-popular imperative to be relentlessly positive was not on his agenda: he was short, sharp, and sardonic to the very end, with one very small exception: in the presence of his daughter, all the "huff'n'puff'n'schtuff" just blew out the window, and he wanted nothing more than to hear in infinite detail how her day at school had been...
posted by pjm at 7:10 AM on August 11, 2016 [46 favorites]


My spouse is not a very internal person, and emotions sometimes take him by surprise, so by and large he remained pretty equanimous through the physical and mental indignities of treatment. He found it funny, not annoying, when our regional cancer center tried to redefine treatment as like taking a sabbatical at a health spa.

But I think what really gets to him is now that primary treatment is over and he is NED, everyone in his life seems eager to move on and treat his cancer as a time-limited struggle that's over and done with now. The reality is that there are lasting effects from treatment, and his kind of cancer has a very high chance of recurring that peaks between 5-10 years after initial treatment (he is two years NED right now). He doesn't want to be defined as a cancer survivor for the rest of his life, but he also doesn't want his realistic expectations for the future erased as needless worry or a self-fulfilling prophesy (ie, if he talks about recurrence, or radiation-induced secondary cancers, that will cause them to occur).
posted by muddgirl at 7:18 AM on August 11, 2016 [15 favorites]


I recall that many years ago there was a notion that attitude and will were what could help one defeat cancer. I visited a former student in the hospital as she told me how she was going to stay strong and win out. I also visited her two days before she died, when clearly she knew will and hope and positive thinking were not going to change a thing for her.
posted by Postroad at 7:18 AM on August 11, 2016 [3 favorites]


I will say that if any part of cancer was a "gift," it's that it has set a pretty low baseline for every other experience. Moving cross-country? A hassle, but easier that recovering from brain surgery. An unfortunate hair cut disaster? Ha, remember when they shaved the front of MuddDude's head and left just the topknot? I imagine this will fade over time. A few weeks ago I actually cried for the first time since his diagnosis, over a stupid work meeting of all things. Two years without crying isn't a gift, it's a devil's bargain.
posted by muddgirl at 7:36 AM on August 11, 2016 [12 favorites]


As awful and repellent a human being as Lance Armstrong has turned out to be, I still give him credit for explicitly refusing to assign himself any sort of moral superiority for surviving cancer near the beginning of It's Not About the Bike.
posted by Halloween Jack at 7:37 AM on August 11, 2016 [4 favorites]


I recall that many years ago there was a notion that attitude and will were what could help one defeat cancer.

For what it's worth, my take is positivity, good vibes, attitude, prayer, whatever, does nothing to shrink tumors. Absolutely zero. The only thing those do is allow you to maintain a facade of happiness when your at one of the lowest points in your life. Will however is different. Will doesn't shrink tumors either. What it does is let you summon the strength to do normal stuff even when doing that normal stuff is more difficult than it used to be. What I hated most about cancer is that it took everything I liked to do away from me. Before I got it, I played lots of sports, ran 5 miles a day, went to work at a job I enjoyed, played with my kids, and went out with my wife. Cancer removed all of that from my life. Will lets you say, "I'm gonna try to get all of that back, goddammit!" and mean it. It doesn't guarantee success at all, but to paraphrase something my grandfather used to say, "If you're gonna strike out, don't strike out looking. Swing the bat. You just might get lucky and hit the ball." I just got lucky and I can now do all those things I liked to do again.

On the flip side of the coin, when treatments fail, will also lets you face death with dignity. I met many people in the infusion room who are not with us anymore who were titans of will power. They summoned the will to make the most of what they did with the time they had left.
posted by prepmonkey at 7:39 AM on August 11, 2016 [11 favorites]


Her Facebook posts have been full of "I'm blessed.." statements. Nary a negative word to be found

It's as if some people feel strongly that at all costs, one must not face the fact (or especially, God forbid, say out loud) that a bad thing has happened.

On the other hand, I read a guy's blog post once that very movingly spoke of the positive changes in his life that being ill had forced him to undertake, in particular, connecting to people. I don't want to disparage that experience at all but, is there not some way to escape the hideous undertow in the culture that almost shames people for not having an edifying cancer "journey" like that?. My father died, crucified in agony, three months after his illness was diagnosed as cancer. There wasn't much enlightenment on the menu, for him.
posted by thelonius at 7:40 AM on August 11, 2016 [5 favorites]


What Sarah Silverman wrote on facebook after her recent near-death scare really resonated with me:

I thanked everyone at the ICU for my life, went home, and then slowly as the opiates faded away, remembered the trauma of the surgery & spent the first two days home kind of free-falling from the meds / lack of meds and the paralyzing realization that nothing matters. Luckily that was followed by the motivating revelation that nothing matters.

Except that last part, turning it into a motivating revelation - well, I'm not there. But this is really the only thing I learned from cancer: nothing matters. We are all subject to whims of the universe over which we have absolutely no control. You can think you understand that, but until you hear the words that you have a life-threatening illness, you really don't. Nobody really believes terrible things are going to happen to them at random. I hope someday I can turn that into a positive, but right now it just makes me mad.
posted by something something at 7:42 AM on August 11, 2016 [7 favorites]


She talks about this in Brightsided. I thought we could use a link to it in here.
posted by Obscure Reference at 7:54 AM on August 11, 2016 [4 favorites]


While this is very much about people who have cancer, so much of this conversation can be easily transferred over into how people talk about mental health in general. Lots of good information in here. Thank you for sharing.
posted by Fizz at 7:55 AM on August 11, 2016 [4 favorites]


Nobody really wants to have to be there for someone getting emotional and bleak about possibly dying soon.

Yes, yes we do (am saying that gently). There are those of us who exist. A friend and fellow MeFite passed away from non-Hodgkin lymphoma earlier this year; he was quite open about it and had both family and friends who hung around and held the grim too. Not all of them, he was also open about the positivity+woo+"just drink kombucha"+"it's a gift!!!11one!!1!" types, but more than a few accepted it as it was, as he shared his experiences – which was grinding, up and down, more downs than ups as the end approached, and filled with pain. At one point he was having such terrible muscle spasms that they fractured one of his vertebra. (How the hell could anyone be happy happy joy joy about that. You'd have to be a freaking sociopath.) I'm still immensely grateful to him for asking to FaceTime when he knew he might not be able to again, and sharing that he was ready to go. Being able to be there for a friend in the way they want and need is an immense thing. I'm not really able to put words to it; still miss him too much.

I do think our society needs to incorporate more narratives that deal with pain, suffering, disappointment, and loss. There are a lot of people who, I think, want to be there for friends in times of bleakness, but with the dearth of models for doing that, I think some "drop out" not because they're unwilling, but because they're scared witless of "doing it wrong." If we shared more narratives, hopefully more people would feel they had the tools to be the friend they want to be in times of bleakness.
posted by fraula at 8:11 AM on August 11, 2016 [43 favorites]


Reading the article is one thing. Reading the MeFi comments is another.

To all those with experience with cancer, I am sorry for your troubles, and I thank you for your insight.
posted by BlueHorse at 8:15 AM on August 11, 2016 [8 favorites]


The most pernicious bit of dumb assholery in modern culture is the idea that people generally get what they deserve. It's bad enough when it takes the form of prosperity gospel and we lionize the rich and jab accusatory fingers at the poor. It's even worse when we tell people their recovery from malignant tumors is dependent on their ability to cultivate and maintain a positive, winning attitude.
posted by DirtyOldTown at 8:20 AM on August 11, 2016 [41 favorites]


Also, Barbara Ehrenreich is a national treasure. Everyone should read Nickel and Dimed.
posted by DirtyOldTown at 8:22 AM on August 11, 2016 [11 favorites]


The most pernicious bit of dumb assholery in modern culture is the idea that people generally get what they deserve.

Ironically, given this discussion and the content of the article, I find myself thinking about how the one upside to my mother's cancer diagnosis was that she had to give up this bullshit once and for all. I finally feel like when we have conversations about the shittier aspects of life as humans, we're existing on the same (unjust, garbage) planet.
posted by We put our faith in Blast Hardcheese at 8:26 AM on August 11, 2016 [3 favorites]


(and i mean, it wouldn't be much of an upside if she weren't currently in remission; but still.)
posted by We put our faith in Blast Hardcheese at 8:27 AM on August 11, 2016 [1 favorite]


Fuck, cancer.
posted by srboisvert at 8:30 AM on August 11, 2016 [2 favorites]


My wife's cousin--an elementary school teacher, Evangelical Christian and a woman who, literally, does not leave her bedroom in the morning until she has put on her makeup--was diagnosed with cervical cancer a couple of weeks ago. As soon as she was diagnosed, her former students and church members started visiting en masse. It's great that they want to support her, and I'm sure she does find it comforting, but I can't help but think that it's also a huge burden to have to play host to so many people at such a time. Talk about having to do the emotional labor for others at the worst time.

Her Facebook posts have been full of "I'm blessed.." statements. Nary a negative word to be found.


I have an Evangelical friend who once, in a particularly unguarded moment, told me that whenever she posts on Facebook about being grateful or thankful or confident, she was really posting about what she wanted to be feeling, not how she actually felt. So now I know that when I see an uptick of #blessed on her feed, it's time to check in and make sure she's ok.
posted by Ragged Richard at 8:34 AM on August 11, 2016 [25 favorites]


If we shared more narratives, hopefully more people would feel they had the tools to be the friend they want to be in times of bleakness.

I don't disagree, for those who can... I don't know. There was hardly any kind of space for getting outside or making sense of the grim materiality of treatments and pain for one of my family members. It was very moment-to-moment, day-to-day. Private and beyond words. (Quick progression.)
posted by cotton dress sock at 8:34 AM on August 11, 2016 [1 favorite]


I do think our society needs to incorporate more narratives that deal with pain, suffering, disappointment, and loss. There are a lot of people who, I think, want to be there for friends in times of bleakness, but with the dearth of models for doing that, I think some "drop out" not because they're unwilling, but because they're scared witless of "doing it wrong." If we shared more narratives, hopefully more people would feel they had the tools to be the friend they want to be in times of bleakness.

Our society (America, in my case) actively punishes what you're talking about here, so creating these models is unlikely to happen in this climate. Spending time caring about others, grieving, forging deeper relationships gets in the way of our apparent role in this society: working and spending until we're dead.

I survived life-threatening situations, though not cancer fortunately, and people have said I'm lucky to be alive. I get a sick kick out of having survived against the odds only to now be a wage slave with very little freedom to do much of anything with my hard-won life except in choosing the method in which I spend nearly every waking hour working until death, while walking the tight-rope without a net. Good times.
posted by gehenna_lion at 8:36 AM on August 11, 2016 [20 favorites]


In his many years as a palliative care physician, Maté observed in his dying patients certain eerie similarities in personality. Many of them were cheerful and agreeable to a fault, never seemed angry, placed everyone else's needs above their own, and were harshly critical with themselves.

I was recently diagnosed with MS, which isn't fatal, but is serious enough that people generally have big reactions to hearing about the diagnosis. I'm finding that when I tell some people, I'm defaulting into huge optimistic positivity about it because I don't have the emotional energy to deal with their negative, pitying reaction. They are absolutely entitled to have that reaction, but I wish (a la the Comfort In, Dump Out model) that they wouldn't dump all their negative stuff on me. (Which is totally different from the sort of shared carrying of the burden that fraula is talking about. I have friends and family doing that, too, and that has been awesome.)

And my worst experience of that so far was with a medical assistant. That experience, combined with the reality that many of us don't want to be "difficult patients," because that may mean we don't get proper medical care, would lead me to believe that how a doctor experiences dying patients may not totally match how those patients actually are.
posted by lazuli at 9:08 AM on August 11, 2016 [22 favorites]


Oh, about my wife's cousin mentioned above. She told my wife about her diagnosis before her four adult children. The cousin's oldest daughter was coming to dinner at our house the day she got the diagnosis, and the cousin asked my wife not to tell her daughter because she was so concerned about how her adult children would take the news. She was carefully planning how to tell them. You get a cancer diagnosis and you're concerned about how other adults--granted, your offspring--will take it? Really? Ugh.
posted by tippiedog at 9:13 AM on August 11, 2016


A couple of years ago, there was an ad for some cancer center that ran on local (MN) TV stations. In the ad, a person in a white smock actually stated that if you have the will and the right attitude, you will 'beat cancer'.
posted by LindsayIrene at 9:32 AM on August 11, 2016 [1 favorite]


You get a cancer diagnosis and you're concerned about how other adults--granted, your offspring--will take it? Really? Ugh.

One of the things I worked on extensively in therapy following my diagnosis was my need to carefully package the news and updates for best possible presentation to family and friends. So yeah, it's a thing. An exhausting, probably gendered, really sucky thing.
posted by donnagirl at 9:40 AM on August 11, 2016 [10 favorites]


I can really get going on this and will try to limit myself, but UGH "beat cancer" is the worst. How did I beat cancer, exactly, when even despite having one of the "best" kinds of cancer you can get and undergoing $692,000 worth of treatments over the course of more than a year, nobody can guarantee me it won't come back? Being a cancer patient is such a powerless experience; you do what they tell you to do and let them put you through all sorts of painful and sick-making treatments, but for me, at least, I never had the feeling even once that I was taking an active role in "beating" anything. It's submission. And there is never a guarantee all that bullshit will even work.
posted by something something at 9:42 AM on August 11, 2016 [11 favorites]


One of the things I worked on extensively in therapy following my diagnosis was my need to carefully package the news and updates for best possible presentation to family and friends. So yeah, it's a thing. An exhausting, probably gendered, really sucky thing.

Gendered in general, absolutely in this case.
posted by tippiedog at 9:53 AM on August 11, 2016 [1 favorite]


When my brother had cancer, I took this positive outlook to an extreme. I called him and chatted with him about everything except his cancer. I refused to talk with anyone about the chances he might die, or my (or their) feelings about that. This was so, so hurtful to him, in part because it reinforced an existing dynamic in our relationship where I did not treat him as a person, but instead as my "baby brother," even though we were adults. Now that he's fine, over a decade later, I still have all this fear that he might die that I never dealt with. Sometimes I wake up in the middle of the night choking with fear. But I'd feel like a total fool talking to him or anyone else in my family about it. My mom was talking to me about a friend of hers who's adult child was recently diagnosed with cancer, and she mentioned a few of the things she said to this friend about her own fear over my brother's cancer. I was staggered by my mom's wisdom and kindness, and pissed that I had robbed myself of it, by trying to positive instead of just being me.
posted by OrangeDisk at 10:09 AM on August 11, 2016 [7 favorites]


This thread (and previous ones) make me wish pretty hard for a MeFi cancer support group. It's like this is the only place reality exists sometimes.
posted by donnagirl at 10:09 AM on August 11, 2016 [7 favorites]


I can really get going on this and will try to limit myself, but UGH "beat cancer" is the worst.

I agree with this, and I often find the "fuck cancer!" movement to be unhelpful too.  It's maybe a personal thing, but anytime I hear fuck cancer, my response is "...and?"  Maybe it's supposed to be an expression of solidarity or something?  But it's not doing anything for me, the cancer patient, and it's not gonna help me 'beat this thing' or whatever. 

I handled chemo and surgery pretty privately; I think the only time I broke down in front of anyone was when I found out that there was a residual mass after chemo and I would need to basically be disemboweled so they could take lymph nodes out from behind my intestines (can't go in through the back, too many nerves and veins and arteries).  I don't think I would have tolerated much "be positive!" bullshit without snapping, and "fuck cancer!" feels about the same.

I did learn that I can probably deal with most anything from that ordeal.  My epidural came out 6 hours after an 11 hour abdominal surgery, and it was probably another 4 hours before they relented and put in a standard morphine drip, so I spent a good chunk of 24 hours post-surgery without any pain management.  I would prefer not to have gone through that, but  ¯\_(ツ)_/¯

posted by Existential Dread at 10:17 AM on August 11, 2016 [12 favorites]


OrangeDisk, it's not to late to talk about your regrets with your brother. If you are still carrying around this burden, why not bring it up with him at some point and tell him how deeply you regret how you responded at the time, etc. You can do that, and it might be incredibly validating and valuable to him as well as to you. No guarantees, but later is usually better than never when it comes to making amends.
posted by Bella Donna at 10:37 AM on August 11, 2016 [8 favorites]


Also, I had the privilege and honor of spending a fair amount of time with a friend before he died of cancer. Mostly he didn't want to talk about his health, which everyone all the time wanted to talk about. And I was cool with that, of course. So while his wife puttered around the house and got a break, we talked about politics. I gave him a foot rub (which he had never had in his entire life, can you imagine?) once. And I read to him. But did not get to read the final three chapters because he lost consciousness after sending me an email about how uncomfortable he felt, how unpleasant it all was. Then he died a couple of days after and I was so mad that his wife wouldn't let me come sit by his bed and just read the rest of the fucking book out loud to him even as I understood that after 7 years of serious care-taking because of his illness, she needed to do whatever she needed to do while he was dying. So I felt my feelings and did not share them. Instead I lit a candle in my place and read the rest of the book out loud to myself while I missed my friend very much. Which I still do. In summary: chronic and/or terminal illnesses suck and as human beings we and/or our loved ones are doomed to suffer and it's great when we don't add to that suffering. So thanks for the tips, links, and initial post!
posted by Bella Donna at 10:44 AM on August 11, 2016 [16 favorites]


My dad is currently on hold with his throat cancer treatments (he lost too much weight, had a feeding tube put in, and then got pneumonia -– the fallout of which we're still dealing with) and I cannot tell you how much I needed to read this, and the comments. I post updates on Facebook because that's where everyone will see them and I am NOT spending hours on the fucking phone updating everyone, and I swear to god when I see the "You're in our prayers!!!" bullshit I want to scream. I don't want your fucking prayers, I want some fucking help, and oh by the way could you please not guilt trip me over wanting to go back home (4 1/2 hours away) to see my kids when there is literally nothing I can do but sit and wait (thanks, Mom's useless fucking sisters)? Make food for my family back home (because my husband is holding down the fort, driving kids everywhere, doing laundry, working his full time job plus taking up my slack), offer to grab some stuff from the store, send me some damned flowers...do literally anything but offer your useless fucking platitudes.

But if I say that, if I say, "Thank you for your prayers but what I really need is X, Y, and Z," all hell will break loose and my poor mother will have to hear for the rest of her life how ungrateful and selfish I am. There are a few people (friends, not family) who have offered to constructively help (like MeFites who mail me and tell me I can vent; that's useful!!). And I take them up on it. But it's a very few, and I just have SO MUCH resentment over the others.

Fucking cancer. It brings out the worst in people.
posted by cooker girl at 10:55 AM on August 11, 2016 [7 favorites]


Thanks for being a good person, Bella Donna. You made me cry.
posted by Johnny Wallflower at 11:00 AM on August 11, 2016 [2 favorites]


I did learn that I can probably deal with most anything from that ordeal.

I imagine this is what people mean when they say cancer is a gift, but to me that gives the disease too much power. Cancer didn't do shit for my family. I call it a bargain with modern medicine. We withstand what we must and in exchange maybe he gets a few more healthy years. How can knowledge of our vast capability to withstand suffering be a gift if we pay the price for it?
posted by muddgirl at 11:11 AM on August 11, 2016 [1 favorite]


Maybe it's supposed to be an expression of solidarity or something? But it's not doing anything for me, the cancer patient, and it's not gonna help me 'beat this thing' or whatever.

Thanks for saying that. I've lost a couple of loved ones to very ugly cancers and I've said the "Fuck cancer" thing myself. It's more a cry of pain from people who've suffered indirectly from cancer, I think. That's definitely what it meant to me when I said it. But maybe that's a selfish gesture, if it bugs some actual cancer sufferers.
posted by saulgoodman at 11:12 AM on August 11, 2016


Cancer is not a gift. Cancer is crappy, crappy rotten luck, a rock that's thrown through the windows of the house that is your body, shattering its integrity; and if you happen to get a chance to wring something good or useful out of that rock, then that is great but the rock itself is still utterly damaging and possibly lethal.
posted by Too-Ticky at 11:16 AM on August 11, 2016 [8 favorites]


So I had "pre - cancer"- which involved an ocean of blood coming out of my nether regions. I was scared shitless. I didn't want to give in to the "gee this is great"thing, but I also didn't want to wallow in fear. So I just accepted it sucked. And didn't tell many people.

With the advent of social media, there seems to be this endless desire to share every bit of your internal life- even if it's not something anyone else can help with or they need to know. I feel like a lot of this positivity bullshit comes from the need to make it a snappy meme, easily digestible by other people. And of course, fear of death. Mortality has ever been a thing people freak out about, regardless of the fact that we all get there eventually. Except you, Walt Disney, you crazy cryo freak.
posted by LuckyMonkey21 at 11:19 AM on August 11, 2016 [3 favorites]


With the advent of social media, there seems to be this endless desire to share every bit of your internal life- even if it's not something anyone else can help with or they need to know. I feel like a lot of this positivity bullshit comes from the need to make it a snappy meme, easily digestible by other people. And of course, fear of death. Mortality has ever been a thing people freak out about, regardless of the fact that we all get there eventually.

I see it just the opposite (though I have a feeling we're saying the same thing in opposite ways): people only post a carefully curated part of their real lives, mostly the good parts. It's taboo in my experience to express negativity on Facebook, and it creates this imaginary world where only good things happen.
posted by tippiedog at 11:33 AM on August 11, 2016 [5 favorites]


In German, Gift means poison.
posted by Michele in California at 11:52 AM on August 11, 2016 [5 favorites]


Well, if Barbara's wrong and cancer is a gift, I guess I'll just give up my research into screening and prevention. Don't want to deprive anyone.
posted by Mental Wimp at 12:06 PM on August 11, 2016 [4 favorites]


something something: But this is really the only thing I learned from cancer: nothing matters. We are all subject to whims of the universe over which we have absolutely no control.

A talented epidemiologist, who produced a lot of first rate research on the causes of cancer and was my colleague in the School of Public Health, died a few months ago of advanced stage cancer. I was caught by surprise, because she kept her disease quiet and only her closest associates knew. She knew all the risk factors for cancer and followed a stringently healthful lifestyle to keep her risks as low as possible. Apparently, prior to her death, she repudiated all epidemiologic research including her own and was embittered by her experience. I don't blame her in the least. The realization that we live in an unfeeling, uncaring universe, especially after living a life in the belief that through careful science (or religion or spirituality) we can obtain a measure of certainty, is something sure to shatter the will. I hope she found peace near the end. Cancer is a hell of a disease.
posted by Mental Wimp at 12:27 PM on August 11, 2016 [3 favorites]


You get a cancer diagnosis and you're concerned about how other adults--granted, your offspring--will take it? Really? Ugh.

To be fair, that parenthetical is a pretty massive caveat.
posted by We put our faith in Blast Hardcheese at 12:30 PM on August 11, 2016


One of the things I worked on extensively in therapy following my diagnosis was my need to carefully package the news and updates for best possible presentation to family and friends. So yeah, it's a thing. An exhausting, probably gendered, really sucky thing.

I was diagnosed last April and still haven't mentioned it on Facebook because I still think I can't handle people's reactions to it.

(I'm NED, and it will probably never come back, but it's cast a long shadow over me.)
posted by purpleclover at 12:42 PM on August 11, 2016 [1 favorite]


[A few comments deleted; please try to take into account whether and how drawing a contrarian line in the sand is actually going to improve the thread that actually exists right now rather than some notional abstract "let's argue about x" discussion.]
posted by cortex (staff) at 1:41 PM on August 11, 2016 [6 favorites]


My parents argued with each other about how to tell us adult kids about my dad's cancer. I knew something was up - in the weeks before I'd said to my husband and a few friends that my dad was sick and I was sure it was something worse than what they told me.

Just like I am pretty sure my mother is ill and not telling us too.

Eventually my mother, she of the terribly pragmatic line, put an end to it. She told us as we finished a very rare entire family gathering. The grandkids were all there too. My father just wanted to put it off and put it off, but it was telling us that broke him. Us kids, we all kept it together until we went home, but as the chemo goes on and on, and he gets sicker and sicker, it wears.

What gift is wrought by trying to keep your business afloat through chemo brain? He already knew who loved him and who would support him, he didn't need to get eaten from the inside out to confirm that.

What gift is there in trying to find gloves big enough for his baseball mitt hands because the cold hurts like knives now? Sure, I gave him a fancy hat that my mother-in-law knitted last year (when I shaved my head, trying to do what I could to keep my BFF company as she died, horribly, from cancer). He didn't need cancer for that either.

My friend who died last year had that mindset. That this was a lesson, a gift, and you had to work out why. Who am I to argue with how she and her husband processed the bullshit that was three bouts of cancer in five years, and a long slow horrible death? But it never made sense to me, philosophically or spiritually, to understand these things as gifts.
posted by geek anachronism at 3:29 PM on August 11, 2016 [4 favorites]


So sixteen years ago the first and one of the closest friends I made when I moved to the US married a woman about eight years my senior. Within a few years, she was calling me "sister," and meaning it, and I would call her "sister," and mean it.

She used to be a chorus-line performer in Broadway, who later got a master's in library science and a certificate and was a information science teacher when we met. But she never dropped singing, dancing, or performing in community-theater musicals. She was widely read. She was an accomplished historical re-enactor. She was a talented amateur painter and calligrapher. It was difficult to figure out whether her knitting, crochet work, or sewing was the most impressive.

Then 2.5 years ago, give or take, I got a phone call on the evening of a day when I knew they were going to go for some tests. "Please come," my friend said, "it's very bad." So I drove the forty miles that I was to drive twice to three times a week over the next months.

It was my second or third visit after the diagnosis that she said something that I will be angry about until my own death: "But why me?" she said, not even really asking anyone but musing to herself, "I did everything right..."

I wasn't angry at her. Never. She was essentially asking if she should blame herself. We're taught to, and this whole "think positive/it's a gift" current is the continuation of that, no? She was estranged from her own family, and then I really learned why. What she must have heard over the years to come to that point of asking that question of herself, with a Stage IV metastatic unknown primary diagnosis at age forty-bloody-three, enraged me.

It's a gift? A chance to better one's self? To learn to overcome adversity? Go look at the abridged biography up there again. How can anyone say that yay, it's fortunate that she got given this chance to improve herself? The way she lived, she had and took many many such chances, only they were called "today," not "unknown primary."

And the exact same thing holds for everyone; whether they choose to (or have the means to) take those opportunities or not. For all of us, that gift is called "today" and it does not come with blood marker numbers attached. And some of us don't get given that gift; something gets in the way. All the way from systemic oppression to, yes, blood marker numbers.

So it turns out that unknown primaries are even harder to treat effectively.

And during the next seven months, while I bore witness to my friends' struggle both together and within themselves... if anyone had come to me with that "gift" line... I honestly don't know that I could not have reacted violently.

And if they had told this to her, as she very consciously watched all the todays now denied to her flow past, in my hearing... After I had heard that question she had asked... When I knew that she was still snatching what she could of each day...

I reacted very viscerally to the post title, and it took me writing out all of this to figure out exactly why. I'm sorry, MeFi.

The (extra) hell of it is that I know her story isn't unique. It's for all that loss of potential, or hers, of theirs, and maybe one day mine, that I say "Fuck cancer." It's not a movement. It's what I think, and how I feel.
posted by seyirci at 4:39 PM on August 11, 2016 [8 favorites]


Six years ago, Ehrenreich was on Warren Olney's "To the Point," discussing the power of positive thinking. Opposite her was some quack peddling a book about how positive thinking actually affects healing on a cellular level. This led to the most remarkable exchange that I've ever heard on public radio, which I loved so much that I excerpted the audio a couple of years later, because I so often referred to it. (Just skip down to the first play button.) I don't want to step on the punchline, but I'll just say this: Ehrenreich wrecked the other guy. It was a thing of beauty.

Also, Warren Olney is a terrible host.
posted by waldo at 5:57 PM on August 11, 2016 [8 favorites]


Although Ehrenreich is indisputably correct about attitude having nothing to do with immune function, the immune system does affect cancer outcomes. Most likely she wanted to avoid a lengthy back and forth with an idiot and so oversimplified, but as an expert in cellular immunology she knows it's not as simple as the immune system having nothing to do with fighting cancer. There is ample evidence that cancers with eosinophil and CD8+ T-cell infiltration have significantly better prognosis than those showing no infiltration. Cancers survive by escaping attack by the immune system, which recognizes tumor cells by their presented neoantigens resulting from mutations in surface receptors. Successful tumorigenesis requires that the tumors evolve local immune suppression and inactivation capabilities. But, to reiterate, none of this has anything to do with attitude.
posted by Mental Wimp at 6:20 PM on August 11, 2016


Cancer can be partly a gift. No experiences that powerful - if you have help I suppose - is just one thing.

People get weird around cancer the same way they do proximate to visible nonconformities. Some people respond by reaching out, some shrink away. It's really a complicated multidimensional continuum though. There is a gigantic range of motivations, some more selfish, some less.

I really can't say that either is "better" from a moral standpoint. (Now is not the time for Nietzsche, for me anyway)

I can say don't tell me to be happy - don't tell me to be anything.

I say this from having completed six weeks of RadChem ten days ago having had stage 4 (stage 5 is a box) squamous cell carcinoma in my fucking head, pneumonia and c diff too.

Cancer was a gift - a learning gift - one I'll only find useful sometimes though.

Being the beneficiary of literally thousands of people - from the people that changed my diapers, to all those unseen to the thousands of years of school that all the nurses and doctors that cared for me: That is a straight-up every day is my fucking birthday humbling and amazing gift.

I'm so happy.
posted by vapidave at 11:53 PM on August 11, 2016 [2 favorites]


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