The "Be Positive" myth

NativeMainer

fitztwins posted this link in the Stage IV forum--I watched it and thought I might not be the only woman in "Middle Age" who doesn't like the constant push to "be positive" and "have a good attitude" about having bc. 

http://www.thedailyshow.com/watch/wed-october-14-2009/barbara-ehrenreich

I know people mean well when they tell me to "be positive" and "it's important to have a good attitude."  I know they are trying to help.  But what I hear is that I can't even have cancer "right" because what I feel is not "positive" what I feel is angry, sad, angry, frustrated, angry, upset, angry, scared, and did I mention angry? 

Does anyone else have day dreams about telling someone in pain right after surgery to "be positive"? Or telling someone whose had a body part amputated "it's important to have a good attitude"? 

PS--yes, I know I'm not supposed to be in the Stage IV forum, but I often click on the "active topics" with interesting titles and forget to check what forum it's in before reading.  I hope I can be forgiven for trespassing--it was not intentional.

OG56

My pet peeve is people telling me I am lucky to have caught it early! I always correct them and say " I might be fortunate, but if I was lucky I would not have been 1 in 7! and I am pretty damn sassy about it too. Guess who said it to me last week? My new oncologist, I don't know if we will get along LOL

I would like to be more positive but like you I am scared and angry etc...and I am so afraid I might go to jail for slapping people. Maybe we should buy those T shirts that say "I see dumb people everywhere".  

janey47

I've been feeling horrible about myself for a week because a week ago I met this lovely woman who said that she was grateful to her cancer (not breast cancer) because it made her change her life and focus on what was important and I had to bite my tongue to keep myself from saying something that might invalidate her experience. 

But you know what? 

I didn't need cancer to know what was important in my life or to focus on what is fulfilling to me or to be grateful for the love & support I get from my partner.  I know I had a really easy time of it, all told, but frankly, the whole experience sucked and I am NOT grateful for cancer.  Screw cancer. 

CoolBreeze

I am positive.  I don't think it will cure me or anybody. 

But for me, having a positive attitude makes the experience I'm undergoing easier.

I kind of think this is one of those glass half full/empty things.  I'm not trying to be positive - it's not like I look in the mirror every morning and say "Today will be great!  Cancer is okay!" 

I just am positive about it.  I look at it like it's just one of those difficult  yet unique life experiences that I'll get through, so why not try to find the good parts?  

I also don't think I'll change or learn anything. I already knew what my life was about, I'm no kid and I didn't need cancer to tell me that.

I don't think people mean harm when they say these things so I don't care if they say stuff like "at least you caught it early" (I had multi-focal, mult-centric IDC, ILC, DCIS, LCIS - 10 cm of cancer if you squished them together - prolly been growing a while! ) 

I'm an athiest and don't mind if people say they are praying for me either.  Cancer is nerve-wracking and people don't know what to say or do so they spout cliches  We do it too, with stuff like the "new normal."  Or, anybody who dies has died "after a battle" with cancer.

If you think about it, very few original thoughts are expressed in normal conversations so it's not unusual that people say the same things all the time. It's just what they know to say.

swimangel72

Thanks for posting that link NativeMainer - I found her very refreshing, especially when she said she doesn't believe in becoming delusional! Lol!

I think the lowest point in my experience was after laying in a hospital bed for 3 weeks, my breast surgeon came into my room, all clean-shaven with his aftershave, expensive suit, shined shoes, coifed hair and big POSITIVE smile (this is a man who obviously takes great pride in his appearance, more power to him - I was like that too BEFORE I was hospitalized with mrsa)..........and he says to me, "oh my, your hair, you need to do something." If I hadn't been so weak physically and emotionally at that point, I would have slapped him! I was able to muster enough strength to retort, "my hair is a mess because YOU won't give the orders to let me take a shower with the drains." His wonderful solution? To remove my drains -----------but alas, it was too soon, as I learned to my dismay upon standing up and watching a river of fluid flow down my legs saturating my slippers. So much for a POSITIVE attitude! I much preferred the nurses who were kind, practical and HELPFUL.

NativeMainer

OhahaGirl, sometimes I, too, just want to lash out, verbally or physically.  I don't feel "lucky" that the cancer was caught early.  I feel mad that I got it at all!  Most of the time I am positive, but there are times when I'm anything BUT posititive, and during those times I want validation that what has happened to me SUCKS OUT LOUD. 

janey47--Screw cancer is right.  Does the fact that having bc hasn't made me into a different person mean that I'm not "doing cancer" right?  Whenever I hear someone talking about changing their life after a cancer diagnosis I want to ask "What was so terrible about the person you were BEFORE the cancer diagnosis?"  Not only have I lost a breast, 2 summers of my life, lots of money and many other things to bc, now I have to accept the idea that I got cancer because the person I was before is unacceptable?  Sorry, not going to accept that one.  I was perfectly acceptable as a person before bc.  I was even happy.  Why would I want to change that?  Bc took it away and I want it back!!! You've got it honey--SCREW CANCER.  I need to get a tee-shirt that says that and start wearing it. 

CoolBreeze--you bring up good points.  Exactly the kinds of points I'd like some of my acquaintances to understand.  I know people don't mean harm, they truly mean to wish me well and I accept that sentiment when I talk with them.  I was a generally positive person before bc, and the postiive aspects are beginning to re-ermerge now, and I nurture those aspects as they return.  What bothers me is the general attitude that people with cancer are supposed to learn something from having cancer, and become better people.  I really don't like the insinuation that something was wrong with me as a person that getting bc is supposed to "fix" or "change."  The things that were important to me before are still important to me now.  Does that mean I hold the wrong things as important becuase I didn't change after being diagnosed?  I know that's not what people are saying, but that's what I hear and it makes me mad.  And sometimes I just want to say so.  Which is why I love this board--I can say what is on my mind and be accepted and given balance!

swimangel--I'm glad you enjoyed her interview.  I particularly enjoyed her pointing out the scientific research that does not support any physical benefit from a positive attitude.  I've run into people who actually told me that I was having so much pain and so many complications from radiaiton BECAUSE I didn't have a positivie attitude!  Like I was not "doing my part" or having cancer the wrong way.  I really, really struggled with the whole thing of feeling hurt, angry, sad, etc, and being told over and over that I SHOULD be feeling grateful, happy, energetic and become a militant bc survivir pushing mammograms on TV.  That's not me, I can't be that way and I don't want to be that way.  It's bad enough to have a cancer diagnosis, be struggling with depression and anger and be told that you are "wrong" because I ddid feel the "correct" feelings.  Ehrenriech's interview was a wonderful validation for me and my feelings--I actually feel like I can tallk about this part of the experience now! 

All I want to know is why I can't be the same person I was, just now with a bc diagnosis?  Why does having a bc diagnosis REQUIRE me to change to a different person? 

OK, I'm going to wear my "special" t-shirt today-- on the front is printed

foxtrot

union

charlie

kilo

cancer

(my apologies for the impolite language)

RoundTwoinCA

Hello,

I haven't posted on here for a long while. I am stage iv and have been for four years. I post less often because  the prevailing emotion in my perception seems negative. What seems to be missing for me is what one poster in the original post in the other thread mentioned - balance.

It makes me feel bad that whatever is posted, there seems to be a response that is to the most extreme of that point - like being positive will cure cancer instead of considering that perhaps it helps them deal with it (like CoolBreeze mentioned). What I want to say is that every post is personal - but to the person posting it, not the person reading it. We do not need to own that opinion one way or the other.

When someone posts about eliminating sugar, there are two possible responses: 

Some will think "who is she to tell me what to eat? What, now I'm causing my cancer because I like candy?"

Some will think "I'll think about that" and then do what they choose. The only difference is how they personalize it. 

I don't understand why people can't just post what helps them deal with it without fear of judgment. For those of you who are new here - this comes from four years of reading posts. Many are good and supportive. Some are harsh and judgmental. This post seems to be a rally around judging those who feel positive thinking is good for them - nobody really knows the answer to that question - not doctors or scientists or anyone else. There seems to be no need to speak ill of those that use it.

To the topic point, I find being positive helps me deal with my cancer. Has it helped my body? I don't know. I feel confident it hasn't hurt my body and I know when I'm negative I feel worse. I can't explain that nor will I try. I know it has helped my mind. I don't need a scientific study to tell me that. It allows me to come out of the darkness faster and stay out longer. It doesn't keep me from falling into it. It is my balance - you can't have one without the other. For me, allowing myself to have the dark times but preventing myself from staying in it longer than necessary is what works. Positive thinking helps me with it.

For me cancer has helped me understand what is important to me - or more relevant - what is not important to me (a new car, a huge house, the latest trends). This is me - not anyone else. This doesn't mean that people who do like new cars, etc. are wrong or bad or whatever - it only refers to me and how I live. 

I say live and let live - if people want to believe in religition, aliens, positive thinking, raw food, supplements, alternative treatment, conventional treatment - whatever they feel helpls them through this journey, I think we should support them. Period.

Much love and support to all of you,

Ginney

NativeMainer

Ginney--when I started this thread it was not with the intent of attacking or even diapproving of other women with positive outlooks.  I started this thread as a place to vent because so many people have been telling me to "be positive",  I was/am reacting to the implication that I did not know what was important to me before diagnosis, the implication that, because I haven't changed my wholo outlook on life that I'm not having cancer the "right" way.  I, too, want to be allowed to live and let live. I'm not asking anybody here to take on my opinion, I truly thought that there would be others who were tired of being told how to feel and how to reapond and that they, too, would be tickled by the Ehrenrich interview and appreciate a thread to share reactions.  I'm sorry you find this to be negative, and I agree the topic is rather negative, but the reality is that parts of the bc journey ARE negative, and I feel it is more healthy to admit to that, express how I feel when I feel badly as well as when I feel good, If the subject of this thread distresses you, I regret that, but this thread does allow me to express how I feel, and commiserate with other women who feel similarly and understand.  This, to me, is the essence of support--accepting others without judgement. 

cakeisgreat

Hiya, Native!

I am glad you started this thread because I think it is good to acknowledge our ups and downs and to know if it's normal or not.  I am young and have no one around me who has bc except a distant coworker, so I like that I can come here and say, I am not positive or I am positive...or today I'm not positive and yesterday I was positive and here is why, LOL!

I didnt take your post as a gripe, whine, or complaint.  I feel it's okay to acknowledge that some people dont know how to react to us.  We dont want to take their heads off, so we acknowledge it here to folks who understand how we feel.  

JMHO...and it's okay to politely disagree. 

NativeMainer

Thanks, cake--  to me Ginney's post is a prime example of what I was talking about when I started this thread.  The message I hear from her post is that I am being negative and since that makes her unhappy I have to change how I feel.  My feelings of anger, fear and frustration are somehow "wrong" because it doesn't fit her outlook.  She is somehow superior or I am somehow inferior because having cancer has caused her to discover what is important to  her and I already knew what was important to me. 

I've sent a long pm to Ginney outlining my reaction to each part of her post, but I am going to indulge myself a little hear and suggest that Ginney was less of a person BEFORE getting bc because she didn't already know what was important in her life like I did.  It upsets me to hear her talking about this process so she should stop talking about it and spare my feelings. 

Yeah, right, I know it doesn't work that way.  She's Stage IV and I'm not, therefore she is an expert and my personal feelings are irrelevant or wrong.  She can come on this thread and post, but I can't post on the existing thread on the same topic because it's in the Stage IV  no others welcome fourm.  I just get soooooo upset when someone tells me that what I feel is wrong!  It's what I feel, I own it and I'm going to express it.  If that offends anyone, I'm sorry.  I tried to clearly label this thread so people like Ginney would stay away--perhaps I should have asked permission form the Stage IV bunch to have a thread that they don't agree with. 

Yes, I know that someone is going to come along and tell me that I'm over-reacting.  Well, today I am in pain, tired from not being able to sleep well for the past 3 years, having one hot flash after another and mood swings from h@!! andthen I come home to this post telling me that it's all my fault for not feeling the right way.  OK, I admit it, I'm over-reacting and I don't have cancer the "right way,"  Go cope and leave me alone. 

It feels good to just "say" that out loud for a change. 

cmharris59

Native

I heartily agree with you! I don't think that I could have said it better.

I have had people ask me how cancer changed my life. I can tell by the context of the conversation that they are expecting me to have had some ground shaking positive revelation. They seem to get rather upset when I tell them that I can find nothing positive in the changes that cancer has brought to me.

I had my priorities in line, long before I found cancer. I enjoyed my life and appreciated what it offered.

Cancer has created a large vacuum in my life. It has sucked away my happiness on way too many occasions. It has taken away my livelihood when I lost my job due to the disabilities it has wrought. It took away my beloved avocation when I lost my balance and could no longer dance.  It has taken away the joy that I have felt in owning my own home, since I may very well lose it and I cannot take care of it now anyway. It has taken away the freedom that I enjoyed when I rode my motorcycle or drove my Mustang outlandishly around town - I can no longer drive a stick shift.  It has caused me much stress and pain physically. Am I a positive person now? ppppphhhtttttt!

Before cancer, I had a job that I loved. It was physically demanding, mentally challenging, and afforded me the pleasure of traveling around the world. I was going to Paris in the Spring following my dx, except that my dx put an end to that. I can no longer manage the physical aspects of my job (neuropathy) nor the mental aspects of my job (chemo-brain). 

I loved to belly dance and it was my release from stress and brought me such enjoyment and physical well being. Now I can no longer dance, I can hardly walk without pain. Even if the neuropathy finally subsides, my PS informed me that my DIEP will prevent me permanently from doing some of the major moves involved with the dance. 

I have a lovely home in the Historic District in a small town. We have a lovely neighborhood and I have been able to decorate it MY way. Now I am on the verge of losing it. I can hardly afford to eat. I cannot physically keep house the way that I always have. I am exhausted just cleaning the litter boxes of my 4 cats. My house is a disaster that makes me ashamed to have others visit. I am alone so I have no help with even hauling out the garbage in my house. I stripped my bed days ago and haven't had the energy to put new sheets on it. Now how is that for positive?

I can no longer ride my beloved motorcycles. I have two, a dirt bike and a street bike. I have no balance and can no longer hold up the street bike. I have a Mustang and a Jeep. The Jeep was for work and for takling me to remote areas to study the geology of the land. Both are stick shift autos and I can no longer drive them because sometimes I don't know where my feet are and it is painful to constantly use both feet. I have actually hit the gas when I thought that I was hitting the brake. Luckily, no one was hurt. I can't even sell them since no one is buying unless I want to take pennies on the dollar.

 Yes, I still have friends. Some have burned out since my tx has taken so long. Yes, I have family. They live hundreds of miles away and have families of their own. My parents are elderly and I can no longer visit them as often as I once did because of the disability. They do not live nearby. I have my cats, but I worry how much longer I can care for them. Yes, I am a negative person.... some days. Some days... I can laugh and smile and move around without pain. I have discovered new hobbies, but they are nothing to compare with my life before cancer.

I missed Paris in the Spring.... sigh

I miss working... I miss riding... I miss dancing... I miss my friends not having pity for me... I miss being helpful 90% of the time, not helpless... I miss my breast...

cmharris59

Maybe that post should have been on the Bitch thread... But I am sick of people telling me to be positive. I am sick of them wanting me to have a good attitude. I was positive and had a good attitude when I started this battle. The only thing that scared me was the surgery. I didn't want to lose my breast.

I was positive that I could get through the chemo and rads easily. I was healthy. I could handle it. I went into every tx smiling and laughing. I cheered others that were going through it. I knew that I could beat cancer. I did, or so they tell me that I am dancing with NED. It is the SEs that have brought me to the end of my positivity. Maybe it will come back but don't tell me to go get it now.

*edited for spelling errors

NativeMainer

No, that post belongs right here.  This is just what I started this thread for.  My way of saying to all the people who insist I must "be positive" that there must be something wrong with them--they're in denial maybe, because they aren't seeing the reality of the situation.  Either that or they're all sadistic (or is it masochistic) psychotics totally out of touch with reality.  Or maybe they just all had terrible lives and being diganosed with cancer was a good thing in comparison.  But I need them to STOP TELLING ME HOW TO FEEL! 

cm--you have lost so much.  I just got done teaching a class of nursing students about loss, grief and grieving.  One of the principles I taught is that all losses need to be grieved.  What constitutes a loss is defined by the person experiencing the loss.  No one can judge the importance of another's loss or the intensity of antoher's grief.  All one person can do for someone who is grieving is be present, non-judgemental, and supportive.  You are grieving the loss of a great deal, from your identity to your lifestyle and dreams.  I, too. lost a great paying and highly satisfying job to bc treatment.  I've lost freinds to burnout.  We're never going to get what we had before back.  The pollyannas either haven't lost anything or won't admit to the loss.  But why do they have to tell us that we are wrong to greive our losses? 

RoundTwoinCA

For the record, I don't recall saying that anyone should change how they feel. I thought I was clear that I was talking about how I feel and how it affects me. There are posts that this is where we can talk about how we feel. This is how I feel. I haven't told anyone they are wrong in how they feel. My way of dealing with this has nothing to do with anyone else. It isn't right, wrong, superior, inferior, good, bad, reality or denial. It's just how I feel. I thought I could be honest here. It seems I cannot. 

Message received and my post will be deleted shortly. 

cmharris59

Oh, I just reread my posts and someone might read that to think that I want my friends to pity me, but what I miss is them coming over without pity. Now I can see the pity in their eyes every time they see me hobbling into the grocery.

cmharris59

And... now I have to spend Christmas in the hospital alone having a DIEP! Yeah, I am positive... positive I hate this disease!

homeagain

BOY OH BOY! Has this post hit a nerve...or 'nerves'? I'd acquired a severe neuropathy one year prior to a 'lump' discovery.  My nerves were soo bad I never did feel 'IT'! The neuropathy, which later was determined to be autoimmune? Was never connected to a 'hatching cancer' as it is  very unlikely in most cases.  But, I've a strong history of cancers in my family and I always do the 'wonder IF's?'

Yeah keeping positive about it all is hell. Some of it is a 'front' at times? That 'front' helps me get thru days that I'd likely give up on otherwise tho.  What options are there?  I'd like to envision that that 'front' is what I would very much LIKE to be! Real now or not. I really don't care a whit about what others think at this point?

Two things always come to mind tho.. it takes much more energy to cry and feel sorry for yourself. I for one and I know of many others who inspire me always.....who make lemonade [the southern sweet kind] out of what they've been given. I try to do the same. But? It sure isn't easy!

Further, a good 'altitude' often encourages your own docs to work HARDER for YOU!  It's far better to 'foster' this aspect than many others.

Yes! I get down! I have occasional personal hissy fits and get it out to and by myself- no others. Then I have a good solid nap! Perchance to dream, which is a rare commodity w/my neuro issues.

Whats that old saying? 'Been down so long, looks like up to me?' Well, where else is there to go?

When a person gets one more 'bit' of bad news? Simply go...WHY NOT?  Whats one more? Comes w/the territory and learn as much as you can about it all and any connections to other stuffs. I have found that knowledge to be my best refuge, revenge and safety net.

No one is 'thrilled' with this? But maybe it's not the 'postive attidude' that's needed? Just an informed and realistic one.  As for ignorant people? That is why I'm usually always w/a cane! I dream of using it Sometime, somewhere! AH! Rite now for me tho? The walker is harder to use as a weapon!

Hang in there? Remember, it could be/get worse?  And never, ever ask yourself that question!

Hope always!  

sanaisa

Cancer does suck.  There is nothing wrong with admitting how our lives have been completely flipped by this disease.  And to hear that I got it against the odds that I should not have, what's up with that? To be told I got it due to "environmental' reasons (the Onc advises it is because either of the conventionally raised meats/dairy products I have consumed over the course of my life, or because of hormones (birth control pills I started at 19 and broke from for four years to have babies...only to go back on them instead of getting my tubes tied)...then I went into early menopause because of the birth control pill at age 40 (that's what the gyn said, as I have no family history of early menopause)... Menses started after age 12, two full term pregnancies before 30, nursed both babies for a ful year... I have had a good life and wonder what the heck happened? The Onc said I had less than a 7% chance if getting this...BRCA testing came back negative. 

So here I am, life is on hold, a bald turkey headed woman who is about as desireable as such (how am I supposed to feel normal right now, when I haven't been my normal self for months?).  Ten months of treatment left and while I have more moments of happiness than not, this cancer place does suck and at times, it seems it has a big ugly mouth that swallows us for a little while.  We scrape for the normalcy of yester-month (in a year it will be yester-year)... and there's nothing wrong with admitting that.  Keep moving forward... hugs.

cakeisgreat

CMharris!  I'm so sorry your having DIEP around Christmas!!!  I'm putting a post it note on my wall right now to surround you with ((((((HUGS)))))) and prayers (if you're okay with that) and remember you all through Christmas.  When you're feeling lonely...just think of chocolate "cake" and know I'll be thinking of you!  Yum!

I'm getting DIEP February 18.  I had bad dreams about it last night.  I guess that's normal.  I am so afraid I'm going to wake up while they are operating (weird phobia).  And it freaks me out to be under anasthesia for 12+ hours.  (Any encouragement posted is welcome, LOL)

I am a ridiculously positive person about everything, LOL.  My kids make fun of me when I talk on the phone, because I sound like Barbie from Toy Story.   But guess what...I dont think it's fair at all that I got cancer at age 37.  I feel like a reject!  I dont know if I'm going to live 20 years like most of my age group.  I have 4 children I want to hang out with till I'm 87.  I'm positive to others for their benefit.  But I like to come here and say this is CRAP and it's not fair that ANY of us are hear!

Sanaisa--you're picture is beautiful!

janey47

As a Buddhist practitioner, I find that the most important aspect of my practice is awareness of what is.  Just being mindful of what is true in the moment.  So often, the "be positive" charge is given as a way to deny the truth of the moment.  "Don't be sad, look on the bright side." You know what?  I know there's a bright side, there's quite clearly a bright side for me, in fact many bright sides, and that in no way prevents me from ALSO being sad, and angry, and frustrated.  And there's no way to get through any of those emotions unless and until they are recognized for what they are. 

When people say "be positive" or "look on the bright side" I understand that what they are saying to me is: "Jane, please keep your problems to yourself.  I don't want to deal with them."  That's fine, that's absolutely appropriate.  Some people can't deal with it and that's good to know -- they're friends for purpose x but not for purpose y.  But it also doesn't mean that there's any value to the advice they're giving, on the face of it.  Denial never helped anyone in the long term.

How can you get where you want to go unless you know where you're starting from?  You can't.  Recognizing emotions for what they are, as they are, doesn't mean wallowing in them (although sometimes wallowing is appropriate, too).  It does mean recognizing the truth of the moment as a means of cultivating moments of clarity and awareness.

KaeLaVie

I think this is a VERY good topic to bring up and was glad to find it today as I was surfing the website at lunch.  I'm almost 6 years past diagnosis and doing fine...now.  One thing that really got to me throughout was the constant chant (and the PRESSURE) to "be positive"!  I truly WAS positive probably 80% of the time.  Went through the whole thing cracking jokes and making others feel comfortable and... I'm sure that helped me, too. But...there were times I NEEDED desperately to be allowed to say that this situation sucked and I didn't like it. I agree that being told to be positive when I finally want to expose my not so cheery thoughts, is a statement of that person not wanting to hear about it.  I laughed out loud when I read that post as it rang so true to me.

I can also relate to the feeling that everyone expects we come through this as some better and suddenly oh-so-wise person.  I'll admit, sometimes that expecatation has really gotten to me.  I read a book or an article about how this person who had been through something similar to me is now (fill in the blank) and has discovered who she is, is leaping tall buildings in a single bound.. and so on.  I felt bewildered because I am just who I was before. I didn't suddenly change.  I had life changes and things I missed out on, but as others said, I appreciate what I had equally, before and after...

 I also don't like survivor labels and the battle designation.  I did what I had to do. I had no choice.  I had to do the double mastectomy, the chemo, the radiation and so on.  It was unpleasant and yes, I did "survive" it, but I didn't do anything special, I followed doctors orders.  I came through it but survivor and battles don't sit well with me.  Someone a long time ago on this forum said "endurerer" is a better term than survivor for this.  Yeah, that's true.    I also feel somewhat uncomfortable with the pink and the walks and the attention that is put on BC when other cancers are not so prominent in the fund raising realm.  I have a friend dying of colon cancer right now...and she has often said that she wishes the focus for colon was as intense as the focus for breast cancer...but I've drifted off into other territory here.  Maybe I associated those happy pink walking people with the pressure to be cheerful LOL

Since I went through it, I've had friends who have been diagnosed with various cancers.  I have made a point to tell them that they do NOT have to be Mary Sunshine with me.  If they felt like cr*p then they can tell me that.  If they are angry, it's okay to vent about it.  Everytime I've said this, I have received gratitude.  So many of us feel the need to present happy and cheerful to make others feel good that we do a disservice to ourselves.  Repressing feelings is not healthy.  Repressing feelings causes stress.  Stress is bad for you.  I'd rather have my good days and my bad days and be honest with how I feel on either end of the spectrum than stuff it alll down and fake it.

Karen  

sanaisa

Karen and everyone, thank you so much for your posts.  You all are saying exactly what I feel...just like you, I do my darndest to portray myself to those that see me in the public light as nothing but positive. And, for the most part, I generally am positive. The day my hair was coming out in clumps in the shower wasn't a particularly joyous moment, nor recovering from incisions or chemo treatments, or shots with SEs to recover from low neutrophilWBC counts.  I have (and continue) to work full time...I don the horrible wig (that by 4 o'clock is nothing glamorous as my scalp screams at me to remove it) as it really helps keep appearance at the normal level.  I hear so often "My gosh, you are amazing! you look great, you don't look sick! You still have most of your eyebrows! Wow!"... here in the boards is the only place I can safely vent and you are correct, repressing feelings adds/causes unecessary stress. Like you, I like the "Endurer" label, too...I don't see myself as a "survivor"...certainly not to any greater extent than the person that struggles to make it through this bad economy. We all have challenges to surmount.  Just some are different than others. For my Mom, her stress is over which curtains to buy...you could argue her stress is less than mine, and most may agree, but to her, it is her perception and not for me to determine.  Like you, I appreciate all that I am able to continue to experience.  I admit that I appreciate the good days better than the bad days (it's pretty tough to be rosy and peachy when you are feeling simply awful, whether it's a bad flu bug or or recoving from a potentially life threatening illness/injury...). 

Last, I have found myself wondering what station I got off early at? Like you, I have seen numerous "survivor" books (friends, so kind, have bought them for me thinking this is what I need to feel better...I love my friends, but, everyone sees this in their own eyes). These books are filled with the realization of what is finally important to the author "now", as a result of seeing the inevitability of mortality. I don't know...all I can conclude is that maybe some people need to see/experience a life threatening experience in order to appreciate the moment and focus on what they feel is "now important."   Here's to the good days that we have left, how we can contribute and make a difference, and I mean that in the positive sense

Brendatrue

I read with interest all the posts. I watched the Ehrenreich interview when it first aired and read a couple of interviews with her about this subject--one that has been dear to me for about 14 years now. Three nerve and body wracking experiences with breast cancer, and people think I am supposed to be positive all the time?!? Yep, I hear it often, and now even more the comment that I should be thankful just to be alive. Well, I am grateful to be alive, but I also continue to experience a range of emotions, like grief, fear, sorrow, and thankfully, joy, relief, and gratitude. I have discovered that merely being alive does not make a life and that to have a life I need to give myself permission to honor all those emotions that are a part of my experience in this body/mind/ spirit. I have learned, more and more, that mindfulness helps me to learn from what I am experiencing and to let go what is not needed, pay more attention to what keeps coming up so that I will pay attention.

Another thought: some people may think that cancer made them a better, more grateful, more joyful, more empowered person, and if that's the case for them--great! I would not try to deny their experience. I ask that others be tolerant of my and others' different experiences as well. And yes, I can say that I have grown in ways that have been useful to me following cancer diagnoses, but who is to say that I would not have grown in the same or equally meaningful ways without cancer? And I wonder, what is so threatening about being open about genuine experiences to those who insist we must be positive much if not all of the time? Is it possible that for some positivity is just a 'veneer'? It takes a great deal of courage to go beneath the surface and deal with the inner workings of being a woman living after/with cancer.

With hope for peace and tolerance....

momtobkandsd

This made me start crying because my husband drove me to a doctor's appt. this morning (only the second he has been to in my 21 months of treatment) and about yelled at me all the way there (35 minute drive) and all the way home about being positive. He said he did not want to hear me say another negative thing about my situation. He had me so upset. I feel like I have been more than positive during this time, rarely complaining and mostly just stating a fact (such as "I need you to transfer your hung clothes from the laundry room to our closet because I can't reach high enough anymore to hang them thanks to the scar tissue"). I am so tired of the positive mumbo-jumbo from those who don't understand.

cakeisgreat

awwww,   ((((Hugs)))) to momtobkndsd.   I'm sorry you had to deal with that today

otter

I've thought about this "be positive" issue a lot since my dx almost 2 years ago, and I've decided it's really complicated.  How I feel about "being positive" depends on my point-of-view, and my cancer dx really hasn't changed those feelings.  If anything, it reinforced them.  So, here's my take on it:

People telling me I should be positive -- I hated the thought of someone saying, "Oh, it's so important to be positive!", but it turned out only one person said that to me. I was 4 months post-chemo and was feeling pretty good.  The person who told me how important it was to "be positive" was a former co-worker of mine whom I saw at a social get-together. He happens to be a very religious person, and he approaches everything as if nothing can possibly go wrong.  If something does go wrong, it has gone wrong for a purpose.  I was startled by his comment, but not offended; his remark was in-character for him and he really couldn't help it.  I imagine other people say "be positive" because it makes things easier on them; but that didn't happen to me.

People who refused to be positive on my behalf -- All throughout my active treatment (surgery, then chemo), some of my closest relatives acted as if I was surely going to die.  I did not hear from some of them at all.  Others, I was told by third parties, "...were having such a difficult time with [my] diagnosis -- they were taking it so hard."  Still others supposedly "cried every time [my] name came up in conversation."  I don't know which was worse -- being made to feel as if it was my fault that those dear people were so miserable, or having one of them think he/she needed to keep me informed of their misery. How could I possibly stay strong througout all this, when I had to reach out and offer strength to them?   My dh, though, was my rock. He would hug me and say, "It's gonna be okay.  No matter what, it will be okay."

People who have inner strength that looks like a "positive attitude" -- Midway through my chemo, I had lunch with a former co-worker who has Stage IV BC.  She has been amazing -- she continues to go to work every day, and stay involved in her hobbies and favorite activities. She seems cheerful even on her worst days.  She said she has tried to maintain a positive attitude, which her oncologist told her was probably the reason she did so well for so long.  I don't know if it's a positive attitude -- it seems more like some kind of inner strength.  I think what she's been able to do is refuse to let her cancer dx and tx bring her down.  She wants to live her life, cancer be d*mned.  But, she has never hinted that anyone else ought to approach their own life crisis that same way. It's just her way of dealing with what's happened to her.

People who I desperately need to have a positive attitude -- Yes, the shoe's on the other foot. My mom is 83 and is having some serious health problems.  Off and on over the past 3 years, she has completely given up.  She has said she is going to refuse treatment, because she is "too tired."  Whenever a new symptom pops up and I encourage her to talk to her doctor about it, she says, "You don't understand.  This is what happens when you get old.  There is nothing to do about it."  I really would like her to at least pretend that she cares about living. Sometimes I think she does care, but she wants other people to feel sorry for her.

So, whether or not "being positive" is a myth, is more complicated than I imagined.  Even though I don't think I should have to be positive for other people, sometimes I'd like them to be positive for me.

otter 

cakeisgreat

Wow, Otter, very good writing...great way to put things together.  I like!  Thanks for sharing!

elimar86861

Otter, thank you for sparing me a lot of typing.

I do not buy into the idea that "positive" people will be spared B/C, or recover faster from it.  On the other hand, I sometimes get sick of myself being depressed and mopey, so I make an effort to be positive about everything I have gone through so far.  Not for others, for myself.  I still reserve the right to be moody.

KaeLaVie

First of all, sending a BIG (((HUG))) to momtobkandsd.  If nothing else, I'm glad you saw this thread when you needed it the most.  Know you are supported and understood here - whether its a positive day or a not so positive day

  Sanaisa, I have to admit that as nice as the "you look great" comments were, I felt so much guilt at being off work at all, that I would internalize that as - hey, she looks good enough to be at work!  hahaha Sometimes I wanted to yell back - "yeah, well I may look okay but I feel awful!" haha  I  think so many people think that when you get cancer, you lose weight and look haggard and so on.  I didn't even know that the steroids would give me what appeared to be healthy, glowing cheeks and that I would turn out to be a masterful eyebrow drawer, makeup artist and good with wigs. I DID look pretty good most of the time - at least when I was seeing people or going out to appts. And no one could see my failed implant that slid and rested right under my armpit...because well...it was hidden under my armpit.  LOLOL   I realized later when I DID share those feelings with friends and some co-workers, that the thought never crossed their mind that I should be at work.  The funny thing is my understanding of all of this came later.  In retrospect, I realize that my thoughts were skewed by chemo and surgeries and my own expectations of myself.   

   The other funny thing is that everyone still comments on how positive I was throughout  and all the stuff we were talking about.  They seem to have all forgotten any of the times that I was a cranky ogre and there WERE some of those times.

  I think we can all agree that being positive is good place to be when appropriate, but it does not make you exempt from getting cancer or recovering from cancer.  Cancer is an equal opportunity thing.  It does't care who you are or how nice you are....it just seems to choose randomly for the most part.  

 On a side note, I just spoke to my friend, Nancy, that I mentioned earlier.  Nancy has terminal colon cancer.  It's not IF, it's WHEN at this point and her main goal is to making it through the holidays...her birthday is actually New Years Eve...  She has continued to be the strength for her family.  They are leaning on HER throughout this.  I'm talking her original family - mom and sisters.  She's not married, no kids.  SHE is making her own funeral arrangements, she is setting up schedules and doing so much. She presents very cheerful and positive and she gets a lot of praise for that. 

Today she said she was glad I called so she could get some of her bad feelings out.  She's scared, she is in pain, she knows she doesn't have much time...and no one will let her talk about this....Or I should say few people will.  She does have other outlets besides me.  I told her about this thread and that others understood and that really helped her. 

I guess we all do know...no one understands like someone who has been there. They can try and that IS appreciated...but they can't understand...and I hope that they never have to.   I hope that everyone can just gain the strength to be true to themselves.  Not to be negative all the time....but to express your feelings as they come.  As someone else mentioned, people who have the flu or a broken leg or other things, feel free to complain at times.  Why not us?

Brendatrue

momtobkandsd---More (((((((HUGS))))))) to you. And I am glad you found this thread right when you needed it. I wonder if your husband is scared and feels more scared when you aren't "positive all the time"? I hope you will feel free to come to this site and be as real as you need to be.

BMac

Otter, you're brilliant.  You manage to say what we all want to, in a concise, straightforward manner.  You've really hit the nail on the head.