The "Be Positive" myth
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Babsbrink-I took FMLA after the lumpectomy and it ran out during rads, ended up losing my job since I couldn't go back to work (had to drive for work, couldn't drive due to need for Xanax to get through rads). I did find out that an employer cannot take into account that you are in treatment for bc when you are applying for a new job. If you can do the job otherwise, an employer has to make reasonable arrangements under the ADA. Of course, finding a job in Maine WITH insurance right now is a big challenge. On the other hand, if you lose your insurance and can go on MaineCare you will get everything you want and only pay $30 a month.You've supported this program with your taxes for years, might as well get some back.
Sarahsweety-the people the nurses see as having a positive attitude do better. The nurses have no idea how many of us are acting so as to be "good patients" so we will get good care. It does us a disservice. It's telling us that our own personal feelings are somehow wrong. I HATE being told I don't even "do cancer the right way." I did that so well that I wound up totally falling apart when I started dealing with complications of treatment. How we feel is how we feel.
That's-life-I read a study somewhere that compared heart attack survivors in the ICU who were prayed for to ones who were, a double blind study, that showed the prayed for patients left the ICU sooner and had less heart damage. I'll see if I can find it again. It was done a while ago and not widely reported.
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You see this "be positive" mantra in all illnesses ... for HIV-positive people, it's often used as a cutesy way of reminding us we have to be positive in our attitude all the time.
It can be damaging because if you don't feel positive all the time, you can feel guilty about that, on top of whatever else you did that "caused" your disease (even if you did nothing to cause it!)
And if you're able to feel positive constantly, then it can be even more devastating when your health takes a downturn.
that's-life, I remember the bit about the "breast cancer personality" ... what a load of b.s.
NativeMaine, I've seen the prayer research that showed better results for people who were prayed for, and since it was a double-blind study, that means the patients didn't know they were being prayed for ... so their own attitudes didn't have an effect. That's pretty cool, and hope for those of us who can't always be positive. We can still benefit from others' prayers.
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hi nativemaine, (and etherize) yes, i read too that prayer aids recovery...maybe its knowing you are loved
, but it didnt add to survival, didnt mean to undermine prayer or attitude, im just glad that positive thinking wont extend my life, because i am not a positive thinking person lol....and your comment re playing nice happy person for nurses/docs IS SO TRUE!!!!...i have learned to do that, to get better service, from past experience i learned the hard way what emotional realness got me in hospital...not much. -
etherize - reading your post re: Kathy Bates, reminded me of one of my favorite movies: Fried Green Tomatoes.
If I knew I was going to have to face the kind of people you encountered, I'd carry TOWANDA bumper stickers in my bag so I could SLAP one on a forehead. Probably wouldn't actually DO it, but just thinking of it would make me feel much better.
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re prayer: on sunday i found out that there is an internationally renowned breast cancer onc, a researching proffessor at my cancer center, just a small town, had no idea!...so i said a prayer to god, saying ' i know i dont believe in you, but if you exist, could you please, somehow, help me find a way to see this fellow' lol...the next morning i was called into his room!! (i am a public patient, and usually see a female onc or her registras)..this is after a year of visiting the clinic..i was so shocked as i had been praying in the waiting room too, that i was flustered, and lost for words, while trying to impress him lol..
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LOL Sunflowers, I forgot about TOWANDA!
thats-life, that's pretty cool that you got the big onc after praying ... I'd be flustered, too! lol Also, thanks for the tip on playing "nice happy person" for the health care people ... I need to work on that, since I tend to be a little too honest, and it probably doesn't help much.
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Cancer cells can be grown in a petrie dish. Do you really mean to tell me they have have a lovely sense of humor that is going to affect their rate of growth? I feel when people say this nonsense what they are really saying is 1) I will never get cancer 2) i have control over the uncontrollable 3) do not burden me with your fears or emotional pain.
Expressing my rage at this miserable disease makes me feel better, far better than pretending I feel positive. -
Oh, Elizabeth, you said it! I think a big part of why people say those things are the 3 reasons you gave, especially #1 and #2. It's also why they are so quick to point out the bad habits you had that "caused" your cancer.
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When I was diagnosed, my boyfriend told me "I can deal with the treatments, the loss of your breast, all of that, as long as you stay positive, just stay positive". I felt so abandoned. Not only did I have cancer but I had to put on a happy face!?? For who? For him? Really?
The other day we were talking about a shift in my priorities that I am experiencing and he said he didn't think he'd do anything differently. Mind you, he works seven days a week, by choice. I suggested some things he might do and then he said he didn't think cancer would affect how he lived his life or how he felt at all. I told him to get a potentially terminal illness and then talk to me. Then we could talk.................
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Molly, I'm sorry you have an insensitive boyfriend. If you stay together the day is bound to come when he gets some sort of illness and complains, or some event at work or home upsets him. Then you can ask him why he isn't staying positive, after all, his life isn't even in danger!
I'm aware that those who have more major stressful events in their life in one year are more likely to be ill the following year. And an elderly person, especially a man, is much more likely to die soon after their partner. And an athlete training too hard will get sick and have to pull out of the race. They even test the athlete's cortisone levels to see if they are too stressed and need to cut their training back. So there is clearly a link between stress, attitude and health, but the attitude can only come from the person who is affected. Anyone trying to cheer us up by denying our feelings is likely to trigger us to feel worse as we don't feel we are being heard. That's something society in general just doesn't understand so we have to put up with the uninformed comments, designed to help but causing us more stress. Maybe some of that money being spent on "awareness" could be better spent letting people know that we can't just snap our fingers and be fine, just as many are now aware that depressed people can't just "snap out of it".
The bottom line for me is that if I let my feelings be governed by other people's attitudes, then I'm going to be tossed around emotionally, so I say to myself, they are just a product of their environment (family, school, country, friends, and our current society etc) and not in charge of how I feel. And that's an incredibly empowering thought.
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Thats-life-----Hi sweetie ---I agree with you. In general too many in society believe we caused this to happen. Cluck'em. AN Aberrant gene starts to multiply for unknown reasons. The unknown reason has been classified as an Oncogene. The body kills many aberrant cells on a daily basis. So, what happens when it no longer identifies a killer cell. That is the question science is trying to solve.
Several weeks ago it was announced that three patients with CLL -----which is the deadliest form of leukemia survived one year with just one shot. The research was stem cell based. This research which had trouble getting approval through NIH and was little noticed, may change the world of cancer therapy. My prediction is it will become the most researched area for the next foreseeable future. It is comparable to the research on AIDS in the 80-90's AS hateful as AIDS is as a disease b/c of the recognition that it had the potential to wipe whole populations which it has worldwide. The research outcomes related to Immunology have affected all other illnesses. This research related to CLL is huge. MY hope Is we are all here to reap the benefits.
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I try to have a positive attitude because if I don't try to be positive I will just curl up and cry. People say being positive helps your body. I hope that is true. BC sucks and I feel that it has ruined the rest of what is left of my loife. WTF??!! Really?! I get so ticked off at it. My hubby says oh you will out live me. yea right. People who are not going thru it don't get it, it's not their fault. I wish it would all go away! I get sick to my stomach when I think about what is going to happen next. Is it going to come back? I gave up smoking, drinking, eating what I wanted to and it may or may not help. I may go to a psyhic just to see. My stomach hurts tonight as I sit and read thru the many posts from everyone on all the threads. I just want to live another 20 years. Is that too much to ask?
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Cheryl, I am so sorry you are going through this. And you are absolutely right. It totally, totally sucks. Where are you in your treatment? How do you feel physically? Do you have children? Breast cancer took one of my dear friends from me. I have seen what it can do but I largely live in a state of denial, which may not be good; I could take better care of myself. Sometimes we need to give in totally to our feelings and sometimes we need to pretend, just pretend that life is just fine. From what I know of life, it continually throws you curve balls, fireballs and boulders. I think dealing with this is so much more than being positive. It is being nurturing and loving, to yourself and others, at least enough to achieve some sort of peace.
(((((Hugs))))))
Molly
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Cheryl--mybee is right, this totally sucks. LIfe and bc throws curve balls and doesn't play fair. Anger is a completely normal reaction to our situation. So is grief and depression. You say you've made a lot of changes in your lifestyle, that is good, BUT that feeds the myth that we do something to make us more susuceptible to bc (or any other cancer). We did nothing to bring this on ourselves. We did NOT bring this on ourselves. That's one of the things that bothers me the most, this blaming the victim attitude that is everywhere. If staying positive helps you cope, go for it. But curling up and crying IS a normal reaction and supressing normal feelings will cause problems later, believe me as I am in counseling now, almost 5 years later, because I didn't allow myself to cry or be angry in the beginning. Your feelings are normal and to be expected. There is nothing wrong with you.
I'll ask, too, where are you in treatment? There are challenges unique to each phase of diagnosis and treatment, knowing where you are we can help you more.
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Mybee and Native, hello. I am done with active treatment. Now on Tamoxofin and other vitamins and baby aspirin and fish oil. I saw my PS yesterday and we are shooting for February for reconstruction so that makes me feel a little better. I was having a mini meltdown the other day, I am so glad I found this site. I see more positive stories than negative and continue to hear about women living much longer now. Sigh....thanks for listening.
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I don't have to try to have a positive attitude, that is just my nature. I have had times where I'ved cried and gotten angry and I freely allow myself those moments. My diagnosis moved quickly from stage I at biopsy to stage II post bmx to stage IV which was an accidental discovery after my lung was nicked during port insertion. I walked around for 2 weeks while my lung slowly deflated and was hospitalized for 6 days, had 3 chest tube insertions and spent 3 1/2 weeks at home with a portable chest tube. I was mad as a hornet in the hospital and in shock when my bone met was found but remain positive because that is who I am. I don't know if this will help me or not in the long run as it certainly hasn't prevented anything. I too have made diet changes and focused on exercise more and I don't care whether I'm feeding any myth or not. I intend to live for many years and personally feel that taking care of myself is part of making that happen. And if I have more progression sooner than later will I blame myself? No! That's just the way it goes.
Caryn -
It is important to have a positive attitude but even I slip into negativity sometimes. But it is like picking yourself up after falling down, you stand back up again. Of course my faith and my belief in fate helps get me through. And anger is good too if you direct it at the cancer. I have tried very hard over 20 years fighting with breast cancer to not think of myself as sick or a cancer patient. I am too busy for that. I apologize if this sounds rude but my mantra to my cancer has always been Piss off, I don't have time for this s**t. After coming back four times now it is more of an irritant to me than anything, sort of like my first husband who pops up in my life every now and then for no good reason. Now it becomes more of a challenge to me because I look at my table covered in lots of medicines for potential side effects of my chemo and I look in the mirror at hair loss and I have to override the thought that I am sick quickly. But I will not let it win or get the better of me even though if I am honest 25% of the time despair takes over. All the best, ladies.
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I do think staying positive can be important for your own mental health, so not sure I am as down on the idea as Ehrenreich (although I get what her problem with it is).
The thing I really relate to is her call for realism. I have BC. Stage 3. This is not good. There is an overwhelmingly good chance that BC will be what kills me, unless I am in some freak accident or natural disaster before it gets the chance (or develop some even more deadly and catastrophic illness). I do not intend to spend the time I have left moping and crying about it and hopefully the BC will take its sweet time killing me, but that IS the bleeping reality. All the same, when I state this simple fact, people, including doctors, rush to tell me not to think that way. What way is that? I am not supposed to be aware of my predicament? If so, they should have given me a lobotomy along with the mastectomy. I find it quite insulting really, as if I am some sort of silly person and they are trying to mollify me with lollipops.
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I am very against the "pink ribbon culture" because of their emphasis on a "good" patient being one who is positive and optimistic, and tries to look good for the sake of her family/friends. There is no "good" way to get through this; every woman should be able to feel that her feelings are valid, even if they are feelings of anger, resentment or anxiety. Some women fight better when they feel they are backed into a corner and they shouldn't be made to feel like they are "doing it wrong" because they are using their anger to get better!!! There are times during treatment when you feel crappy and you shouldn't be made to feel guilty because you just don't have the energy to look good and be positive. For me - personally - this smacks of "blame the victim" because they can't conform - through no fault of their own - and, in my opinion, it just seems so wrong. The "pink ribbon culture" may help other people cope with your diagnosis, but it may leave you feeling frustrated, unheard, and angry.
That said, finding positivity again is important to being able to move forward after breast cancer. However, how you do that is a personal thing and should not be according to other's expectations. You have to find your way the best way you know how. Sometimes, it isn't about being positive and optimistic, but about being focussed and determined. And if anger, resentment and anxiety help you retain focus and determination, DO IT! And damn the torpedoes!
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The next person who says to me "Just stay positive" Gets a smack in the gob! -
Tasha
You made me laugh out loud !!! It is amazing how people expect someone that is going through the hell of chemo and rads and are losing their hair, their breasts and possibly their life to be running around with a big smile on their face!! I heard the be positive crap the whole time I was in treatment yet these same people who do not have cancer bitch and moan about being tired, having to take their kids to hockey or being stressed about the little things I would love to only have to worry about now! I actually had a dental hygienist tell me that she knew two ladies with bc and one that was positive is still alive and the one that did not died! What an idiot.
Still giggling at your comment Tasha!!! -
When I first got my diagnosis, I was going through books showing pictures of women who'd had mastectomy's & reconstruction, and was feeling absolutely shocked and floored by the whole thing & trying to make decisions. I tried to talk to my boyfriend about it and share a little of what I was going through. He took me by my shoulders, one in each of his hands & faced me squarely towards him and said "I can deal with the breast cancer part - as long as you just stay positive". I just stared at him in amazement at the incredible lack of depth his comment showed; I was stunned and afraid. I think deep down I knew that it was such a conditional acceptance of my diagnosis and everything that was up ahead of me, that I knew he wouldn't be around for long. Less than two months after my mastectomy, I broke it off with him due to his extreme insensitivity, emotional abandonment and just inability to cope with the situation. He just no longer seemed a 'real' man to me. Not only did I feel it in the pit of my stomach when he told me to be positive, but yes, I wanted to smack him too! -
i like this forum- some of the others are way to rah rah and fairy wings for me and I hate all the cutesy language like lumpies and free-boobing- maybe its a coping mechanism for some but I think its making light of something that takes all your energy to work with.
I try to think of it like other surgery- when you have your gallbladder out you don't say afterward I have gallbladder disease- the source control is the solution to the problem. Its not as simplistic as that of course because you don't get a "recurrent gallbladder" LOL
We all know that life is 10% what happens to you and 90% how you respond to it. Some days waking up in the morning and getting through the day is positive considering the alternative- I don't have to like it but I do want to do it for myself and my family.
I just had surgery 2 weeks ago have not started the rads yet- many I know are on the "positive" kick but maybe because I work in healthcare I have some sensitive friends saying- you have your shot at treatment and maybe a cure give it everything you have got for the best chance. That works better for me. Doing things that make me less tense and less anxious are good for me. Pretending its "all good" is probably worse for those stress chemicals than a lot of other things. -
mybee, good call. Your reaction to this utterly stupid nonsensical word is the best Ive heard in a long time. Pity a few more don't catch onto whats really behind this DUMB saying. Sounds to me like you made a great decision and you're better off. I totally agree with the title of this thread, the "be positive" nonsense is a myth. All it does is actually victimizes the victim more by putting the onus on them as if they think hard enough they can make it all go away....oh and not to mention its peoples way of saying "hearing about your trouble is too hard, coz it might remind me of what I might have to face sometime".
"positive thinking" is a misuse of the English language, and is certainly an insult in ANY EVENT. -
AMEN! -
(Bumping this thread, because I love it.)
My friends were so well meaning, saying things like, "I just know you are going to make it because you are so positive."
My responses varied from, "Well, I don't usually make my phone calls to you in the middle of a cry-fest" to "I guess my online buddy was not positive enough, because she died" to simply, "That's a crock. It doesn't work that way."
The paradox is that I do think there is something to physical stress or emotional stress being tied to how well the body's immune system functions. It's just that I don't think it any ONE thing. Cancer is complex (at least judging by how many years of research has been done already and still no cure) so maybe cancer is this really huge jigsaw puzzle, and I can't rule out that "positivity" just might be one of the pieces. I think a lot of factors come into play but who even knows how they weigh in against each other? Until it's discovered why we get cancer in the first place, I say save yourself the time of any guilt-tripping.
Yes, I am positive most of the time. But only because I think it feels a little better than times when I am mopey.
I really liked the comment that pointed out how anger and resentment can really help you focus. I agree.
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Similarly but not exact is that is for quite a while the idea that "a positive attitude will get you out of this" has always really bothered me , simply because the way its put so much of the time implies/infers without saying that:
if a positive attitude can get you out -- then it must be that a crappy attitude is what got you here in the first place.
Its all over the cancer-related commercials and everything.. listen for it..
There's a commercial for St Jude Children's Hospital that bothers me on many levels.
There's a pretty young girl there (looks maybe to be 11-ish in age) obviously in chemo (with her bald head) with a bit of makeup on and earrings, saying "Attitude is everything" -- I suppose she's repeating out what she's been fed in all the time...
I even saw one of the commercials (another, trying to recall enough to describe it) on the TV in the waiting room at the cancer center. It bothered me so that right then and there I complained to my friend about this inferring/next natural thought process ("so, how crappy was your attitude that you got cancer?")
Listen for it, its even in the places that should know better.
(are we really supposed to not even read in the Stage IV forums? I knew we're not to post there -- but really, we're not supposed to even be reading there?)
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it IS. A MYTH. - a 15 year study was done aiming to prove positivity helps but in fact it proved that people who authentically expressed free flowing emotions were the survivors - i cant remember study name but Penny Brohn Cancer charity have the study on file, equally a study shows daily exercise reduces recurrence by fifty percent, so we have more power than we know
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Lily,
"people who authentically expressed free flowing emotions were the survivors"
-- really glad to hear it because that's pretty much me. I don't hold back much.. sometimes its right away, sometimes it make me a bit (there may be a delay to brew up a response sometimes).. but you could ask anybody who knows me and every last one of them will agree (nodding heads vigorously as they do) that if something's bugging me -- they're gonna hear and know fully about it. (same people also know when I say something positive its also just as real)
Generally speaking I think I'm a nice person, I hope I'm a nice person.. I try not to get bogged down in depression etc but it happens.. I can be a bit paranoid, I am a product of my experiences, etc
but whether my heart is in the right place or not.. with some exceptions of course, generally its much easier for me to chew somebody out/confront than it is for me to express properly the nice things I feel and mean to say.
I don't post a lot of of sorry to hear that and hope you're doing better at people on here, primarily because its a given, I think.. I think it at people.. but I am listening too.. I do a lot of just nodding and listening in RL, both if I don't know what to say (in which case I may just say "I don't know what to say"), and as my way of showing support and unfortunately that doesn't translate well to text...
I also am aware enough to know that just because I myself have breast cancer, doesn't somehow magically keep me from saying the wrong thing to another... I've said some cliches... on here even .. feeling awkward I actually finished a post on here in another thread with
"stay strong and when you can't do that stay the course"
and kind of slapped my forehead when I did it, but I wanted to have something there, so I had to leave it. (especially when people say something directly to me along the lines of "I'm so sorry you have to deal with this" etc to me, I feel a kind of a pressure to come up with something, to say it back, that it looks odd or selfish to just take it in and keep going without visible response)
I'm very open as to my feelings (face is apparently also very easy to read), but as a result, I am the quintessential bull in the conversation china shop. Just because I have cancer myself doesn't change that.
There is no magic automatic social-skills acquisition as a result of having cancer.
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I think it all boils down to six little words that NativeMainer posted back on November 16, 2009:
STOP TELLING ME HOW TO FEEL!!!
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