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Cancer and Shame?

aysemari's picture
aysemari
Posts: 1586
Joined: Dec 2009

In an ongoing quest better understand myself, I M raising yhis

question. I first saw the above mentioned words side by side in a

post on this board and realized that I have felt shame. But why is

beyond me. Has anyone else felt ashamed? 

enlighten me as you always do, hugs

Ayse

SIROD's picture
SIROD
Posts: 2116
Joined: Jun 2010

 "realized that I have felt shame."

For the life of me Aysemari, I can't understand why anyone would be ashamed to have had breast cancer?  

This is what the Susan G. Komen Foundation removed with their PINK movement.   It's the 21st Century and I can't believe that anyone would be ashamed in having a disease.  Are you ashamed when you have had the flu, a cold, the chicken pox or any other ailment known to man?

I really wish you would explain why you would feel ashamed to have breast cancer.  Breast are a normal part of anatomy.   Both men and women have breast and that they are prone to a disease is no different than the blood that runs through our veins that might develop leukemia.

What is there to be ashamed?   I really am posting this to hear an answer.  I have never felt ashamed of a disease I had no control over having.  I am not ashamed of developing any of my other ailments either and I have plenty.  It isn't as though I sought them out.

Best,

Doris

 

 

aysemari's picture
aysemari
Posts: 1586
Joined: Dec 2009

Doris,

 

I can see your point. Let me explain a little better what I felt. First ot all I really wasn't even 

aware of it at the time. It really wasn't until I saw the post and the two words together like that

that something clicked. And I realized that I had felt ashamed. 

 

One major area for my shame was that I had no one by my side. It made me feel unwanted,

unloved. No family, no boyfriend or even a very close friend. I had just moved to AZ and my

one friend and business partner moved away but I decided to stay on. I had 2 jobs and full time

school, so really not a lot of time to build relationships. Sure I knew people, I had even just started

dating a really nice guy. But the first reaction for most people was fear and then flight. And I can't

say I blamed them. They barely knew me, and maybe they were afraid that I would need more than

they can give me. Eventually they did start coming around but by then I had gotten a handle on my

situation and honestly did not need the stress of trying to handle their emotions. I still met with them

but never asked for anything unless I absolutely had to. I remember the dreaded question at the

hospital, in the infusion room, after a bad reaction to chemo - do you have someone to accompany

you home? No, just me or No, just me and a taxi. Except that time when MissRenee drove me to

my mastectomy, it really mant the world to me. 

 

Another time I felt shame, was when I had to go to my work place and I had gained 20 pounds, just

like that. I walked every morning, even bought a Nordic track, since I was not a good candidate for

the gym with my compromised immune system. In addition I did some gentle yoga. Yet there I was

bold, chunky and yeah the flat chest. I knew everyone was staring and no one approached me or said

something. It made me feel very isolated and yes ashamed.

 

Being a very independent and strong woman, it was very hard to ask for help. I think I also felt ashamed

to ask for help. It made me feel weak. It was all a learning curve for me. And I learned a lot about myself

and people's reactions and limitations, how to accept and deal with them. 

 

Everyone's experience is different based on their situation. Family status, financial status - all affects a 

person's experience going through treatment. This boad has helped me so much to understand my

emotions and how to deal with my side effects. It really helped me from going off the deep end. I have

some amazing ladied to look up to and learn from and I tip my hat to you amazing ladies who taught me

to find the courage and gave me support while I was finding my way. Love you ladies, you know it, don't you?

 

Hugs,

Ayse

hope4thebest's picture
hope4thebest
Posts: 108
Joined: Aug 2012

This board is so helpful to me, I can relate to you all.  The whole shame game that takes over some of our lives with bc, it has been with me since the beginning.  I tried to keep my diagnosis a secret from most people, and still don't tell many.  Now that I am post treatment, I have the shame come and go, but it is getting better.  I agree that alot is related to out appearance and how otherrs see me, but it also how I see myself.  I cannot predict that everything will be ok.  It is painful enough as it is on me, I hate to inflict this uncertainty on others whom I care about.  That is what this board is for!!  We all can relate on some level.  

I have started to ask for help.  Yes, very hard.  When I finally do it, to my surprise, the people who I thought would give it do not come through, but eventually others that we didn't expect that come around.  It is good practice to ask for help; and it gets rid of those leeches if their intentions are not true, let them be gone for now,  We have important work to do.  

I, too am looking forward to this new road, we will pass shame by, and who knows what else we will find.

Annie

SIROD's picture
SIROD
Posts: 2116
Joined: Jun 2010

Dear Ayse,

 

I have read the responses and the word "shame" has different meaning to each person who posted.  To me the word shame means humiliation.

 

Mine was in retrospect of all the women who suffered and died in silence due to societies stigma on the words breast and cancer.  My aunt diagnosed in 1959, went through the awful treatments of her time and then pronounced "cured" at the five year mark.  Six months later, in June 1964, an x-ray revealed that her cancer had spread to her lungs.  She died in September of that year.   No one ever stated her cancer was that of the breast but only mentioned that cancer was in her lungs.  Any conversation on cancer was whispered about in back kitchens with only close female relatives.  There were no books to enlightened and certainly no support groups to help these women and men in those years before Komen made BC, a very public word.

 

I was elated in 1974 when Betty Ford, First Lady spoke publicly of her breast cancer diagnose.  To many she will be associated with alcohol and prescription drug additions.  For me it will always be her bravery in talking about breast cancer.  Marking the beginning of taking the centuries of shame out of the mixture.

 

There is for me no personal blame for breast cancer, as no one knows the cause of this disease.  One renegade cells, forgets to die off and then begins to produce similar cells.  The immune systems usually corrects the problem, so many times in the course of our life.  One day, for reasons yet to be understood, it doesn't.   The cells build up to be a tumor and for those like me, tumors that spread to distant organs.  I find no blame in this concept.  It isn't my fault and therefore, I have never had feelings of shame.

 

I was divorced, with 2 sons at the time of my diagnosed and the sole provider.  I needed health insurance and therefore I had to work during treatments.  I did work during my treatments in '99 and always returned asap back to my job after surgeries, biopsies and etc.   It wasn't because my employer expected me to take as little time as possible.  I was told to take as long as I needed.  This has always been my way to deal with cancer or my other medical issues.  Move on. 

 

Did gain weight during chemo and while taking Tamoxifen but I knew that these were side effects of the drugs.  Tamoxifen was used for 4 years until my 1st recurrence.  When indeed, the experience was behind me, it took me 4 months to loose the weight to where I was pre-cancer and in no time was enjoying life again.  I did have two ribs that had mets but Arimidex was keeping me NED.

 

Our experiences are so different and it does seem that I am the odd woman out.   I do feel badly for those who feel or felt shame. 

 

Doris

aysemari's picture
aysemari
Posts: 1586
Joined: Dec 2009

we are alike... when feisty left,shame started to pop by

SIROD's picture
SIROD
Posts: 2116
Joined: Jun 2010

You know I thought about this again today and partial answered in Camul/aka Carol post on Grieving.

I work in a school system.  The first student who I knew had cancer was an 18 year old young lady.  She had been accepted in a program to spend a year abroad before going to the college of her choice.  She was a very gifted young lady.  She came down with a very aggressive brain tumor and was dead in 9 months.  I had never known anyone who died so quickly. She did everything that was offered to her by the Cancer Center to no avail.  The next was a young woman who asked for help on the computer.  As I was checking out the wires, I noticed she had an arm/hand prosthesis.  She was a new student and didn't stay long with us.  I never knew how it happened.   I did think how much work she had to do in order to have her arm and hand functioning.  Especially versus my breast which was just removed.  She was between my diagnose and my first recurrence.

The one that happen with my first recurrence was a young man who had sarcoma.  He had cadaver bone replacing his cancerous one.  We talked a lot because I told him that I just had a recurrence blah, blah, blah.  He had one infection after another and long hospital stay each time.  Eventually, he gave up and had the leg amputated.  He went through chemo but can't remember if he had radiation.  Another student who I thought was so brave had lymphoma and went through chemo, radiation, loosing his hair and all.  He rarely missed a day of school.

It is hard when you see these sort of struggles to ever feel sorry for oneself.  These young people were just beginning life...

There was one incident that I found funny.  I was going through radiation.  I was having lunch with my co-workers and there was a mandatory meeting that everyone needed to attend after work that day.  It was one of the best days of the spring and without exception there was moaning, gripping, grousing about having to be inside and instead of being outside on such a gorgeous day.  I had radiation treatment to go to and was excused.  So I said, "anyone want to trade places with me?".  Silence!  Everyone became busy looking at their lunch.  One, looked at me and said, "point well made".  I said, I "thought so" and proceeded to change the subject.

I guess we all have different experiences that make us who we are and how we react.  I am a bit of a bull dog.  Are you?

Doris

 

 

BlownAway60's picture
BlownAway60
Posts: 831
Joined: Nov 2009

Dear Ayse,

I know how you feel. I try to be as normal as I can but I am not. I have been forever changed. Maybe that is the shame in it, that we are not exactly who we used to be and that is a very scary thing. We all love the safety of knowing exactly what our lives are going to be and then boom we get socked in the jaw by cancer. We ask "Why me?". What did I do to deserve this? I tried to be the best person that I could. Where did I go wrong? There is no understanding to it or of it. We did not choose this path, it chose us. Yes, there are times when I am ashamed and saddened that I have had cancer and that my life has changed in ways that I could never have imagined but maybe I am a better person because of it.  I try not to dwell on the negative but it is not always easy. We are all so different in what we feel and think. Who among us has the right to say what is right or wrong.

 

Hugs

Donna

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BlownAway60
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TraciInLA's picture
TraciInLA
Posts: 1829
Joined: Jul 2009

Ayse,

First of all...every one of us is entitled to feel what we feel, and I love that you're asking this question to try to think through your feelings a little more.  Good for you, and good for us, too!

For me, I think there's a difference between "what if?" and actual, full-blown shame.

I've definitely had lots of moments when I thought, "What if I hadn't taken birth control pills for so many years?"  "What if I'd worked harder to lose weight?"  "What if I hadn't eaten so much junk food in my 20s and 30s?"  "What if I'd started exercising sooner?"  What if, what if, what if...maybe then I wouldn't have got breast cancer.*

On the other hand, when I lost my hair, the reason I refused to cover my head (except when I was out in the sun) was because that felt to me like I was saying I was ashamed of having cancer, like I wanted to hide it, and that didn't feel right to me at all.  Again, each one of us has different feelings about this -- those were just my feelings.  That was the point where "what if" would have turned into shame for me, and I wasn't going to cross that line.

Traci

*Side note: I actually started a real, planned, consistent exercise program for the first time in my life about 6 weeks before I was diagnosed -- which proves that exercise causes cancer, and we should all avoid it! Laughing Laughing Laughing

telecomjd
Posts: 66
Joined: Jan 2013

Totally agree with you.  I also have found during this process that I am awash in emotions because my body has so much going on with it.  Chemo drugs, anethesia from surgeries, new breasts, etc. kind of mess with you.  So, sometimes when I have felt shame (i.e., I feel badly that my husband has to deal with this mess), I have attributed it to the wild mood swings and such from my treatments.  It's totally okay to feel crummy sometimes.  It's part of the healing process and helps you deal with the reality of this disease.  Just know that there's no clear answers on why this happened.  I try not to focus on the past, but on getting through my treatments and using this experience as a chance to embrace fully the wonderfulness that is my life.  I don't plan on taking opportunities for joy for granted.

Chickadee1955's picture
Chickadee1955
Posts: 333
Joined: Apr 2010

Oh my gosh, Traci!!!   I KNEW exercise caused my cancer!!!  (what little I did)  

Actually, I accused my doctor of causing my cancer.  I was fine until he told me I should do 

breast self-exams.  The first time I did one---BOOM--I found I lump!  You should have seen his face

when I told him that!

Chickadee

 

SIROD's picture
SIROD
Posts: 2116
Joined: Jun 2010

I really wish I had.  That is a good one!

Doris

NorcalJ's picture
NorcalJ
Posts: 192
Joined: Feb 2008

Hi Tracy,

I haven't been on in a few years because I thought I was all done with this "adventure" after bilat. mastectomies, radiation, chemo, implants and even a hysterectomy due to my BRCA2 pos. results.  But NOOOOO---breast cancer is the "gift" that keeps giving!  I have mets to a few areas now and will probably start the joy of chemo again soon.  Have read all kinds of things during and after my first go-around, and had to quit reading---so it's obvious that reading also causes cancer. 

I don't think I felt shame when I was going thru the "bald" period, but I did notice that when I'd go to the store with my scarf on, people would either look away (it might be catching) or stare.  If we made eye contact I'd always smile, and they seemed to relax.  I also made a point of carrying out my own groceries to show them I wasn't on my last legs.  Maybe that was the flip side of shame.  More like defiance.   

People who stare, or comment, or avoid us should be the ones who are ashamed.  We're dealing with it----but for the grace of God go they!  And how would they deal with it?  I think you're all doing a wonderful job of handling it by being on this site and helping others while you help yourself.

I'm over 60, and this is just one of those things that make me a tougher, "don't mess with me" old lady.  With luck I'll get older and tougher (my poor family!)

Jan 

KathiM's picture
KathiM
Posts: 7864
Joined: Aug 2005

But there were days when I didn't feel enough myself to venture out.  I was very pale, had lost alot of weight from the chemo, and had lost my normal "To heck with everyone" sort of attitude.

The is a physical effect of cancer, sure, but there is also an emotional/mental effect...

It seems that when something rocks our world, as cancer did to me, it makes us all question who we are, and where we are going.  We can certainly not go back to familiar living, so we must reinvent who we are...in our own minds as well as in the minds of others...and that really, for me, made me feel very vulnerable for the first time in my adult life.

(You know me, shy, retiring flower)....I now celebrate that time as a sort of phoenix rising....I LOVE who I am now...and no one has the right to question my core beliefs.....my actions, surely...but nothing that is at the base of my being!!!

GREAT post, dearheart!!!

Hugs, Kathi

 

lintx's picture
lintx
Posts: 456
Joined: Sep 2012

Each of you hit on things I've felt, too. I couldn't have written it better. It stands to reason that a physical defect in turn causes an emotional one.  I'm different now.  I'd say more withdrawn, and I make excuses to avoid many women's social events.  I haven't labeled it with an exact word, but I get it!  Linda 

Gabe N Abby Mom's picture
Gabe N Abby Mom
Posts: 2415
Joined: Sep 2010

I too have felt shame.  I didn't always realize it, usually something brought it to my attention,  One time I rememeber was being fitted for my prosthesis.  After we were done, and I left with my prosth...the fitter said "now those shoulders are square and proud instead of rounded and hiding your chest."  I still only go without my prosthesis when I can 'hide' my mastectomy.

The second time I remember, was the first day in my new branch.  One of my members. aka customers, said 'girl raise your head and hold it proud.  You're here aren't you?"  Boy, did that make a difference. 

I think these are opportunities for us to learn, about ourselves, our disease and how to handle it from day to day.  Most days, I don't feel shame of any kind...but yes, it does sometimes show up.

This seems to me an opportunity to share a video about Ben Underwood, not a cancer patient but incredibly powerful none the less.  I have met and spoken with his mom on many occaisions (after Ben passed)...she is as amazing in person as she is in the video!  She once said to me "I share my pain and anger AND JOY with god, the rest of this world only sees the joy."

http://www.youtube.com/watch?v=G1QaCeosUmw

Hugs,

Linda

 

missrenee's picture
missrenee
Posts: 2137
Joined: Apr 2010

horrendous disease.  One day--one emotion, different day--different emotion.  Random statement from someone--yet another feeling or emotion.  No matter what any of us feel or think while we're in this fight--all feelings are valid.  I know, for me, I have run the gamut.  But, I do try to feel love and gratitude before all else.  Sometimes it works, sometimes not so much.  I think we each get through this the best way we can with whatever feelings we happen to feel.

 

Love and hugs, Renee

Lynn Smith
Posts: 1265
Joined: Mar 2011

Well said by all of you.It's just alot of emations wrapped in one.Life isn't the same and we do feel different about ourselves. I wasn't ashamed so much in the beginning. I just had one breast smaller than the other but that I expected.I had many surgeries on that side for years.That's what got to me. Then Things went pretty normal till I got bronchitis and now I don't feel comfortable about my body.I lost weight and didn't need to and everyone wants to know if my cancer is back.If I would've never been dx with breast cancer they would just think I lost weight but now they think something worse so I do feel bad for them to think that. One thing that bothered me was I was asked to go somewhere(a function).it was told(a rumor for them) I lost weight.They wanted to see for themselves.They did and the remarks were endless.you Gotta eat gotta take care of yourself and then some said" OMG have you lost weight".They knew.The function wasn't about what we were there for it was about me and bronchitis but they feel it's the cancer.And I'm in remission and have been for 3 1/2 years.  

How do I feel now.The worse in all my years.I don't even shop now.Husband does it for me.I sit in the car with my dog who goes everywhere with me.I just don't want to see people and hear such crude remarks. People can be cruel.

I even broke down and did Vitamin IV therapy(I insisted) since I got low on vitamins.I did 5 treatments and saw not one ounce of improvement so now I've taken a break.I gained maybe 2 lbs after the treatment but going to the bathroom flushes you out so a no win situation. 

Will I ever gain my weight beck.No.Like some people tell me "when you're older(I'm 65) we tend to not absord our vitamins.I see that now.

Last year I walked around proud but not this year. Won't be going to the functions I went to before.I'm short 5 ft but still need more weight.  

Lynn Smith

camul's picture
camul
Posts: 2004
Joined: Dec 2010

I saw it as embarrassment, but it was the same feelings.  I really felt it when I was having my reconstruction surgeries and had to ask for rides.  I was always the strong one helping others and really didn't know how to ask for help, and felt so weak for having to ask.  When I lost my condo and went looking for an apartment and couldn't even rent one with out a co-signer.  Here I was 53 years old, always had great credit, had a well paying job, have 2 BA's and was being treated like I was worthless.  I felt so ashamed that I was not better prepared for a catastropic illness! Yet I went back to school, worked through my first bout of cancer, bought my own home, all as a single mom.

The weight gain has been another topic of embarrassment.  It has bounced up and down since starting tamoxifen, then it got worse when steroids were added.... then I lose, go on another med and gain.  There have been so many times when I just wanted to run and hide from it all. 

Now that I am seasoned at all of this, I see it differently.  I know that I did nothing to cause it, however, when I was down physically, then mentally, there were (and sometimes still are) times when even though I knew this, I still felt that somehow I should have been able to do things differently so that I didn't get cancer!  Amazing how our minds work.  I think a lot of those feelings came from fear of the unknown. Would I ever get well?  Would I be alone for the rest of my life?  What if I couldn't go back to work?  All of this did come into play, and I am still living, mostly content with my life and my decisions, but still from time to time the shame/embarrassment issues come up! 

I am so glad that you brought this up.  I think a lot of us have felt this way but don't always know how to voice it, because we know that it is irrational but we still feel it.  I think being single can be really hard while going through this because we don't have that partner that we trust enough to share some of these feelings with! 

Love you Ayse,

Carol

 

 

 

 

sea60's picture
sea60
Posts: 2601
Joined: May 2010

as it's personal to each of us. I feel part of the way one sees this diagnosis and reacts to it has a lot to do with one's personality. For me, the "shame" was more like "Why me?" "What did I do wrong?". Like Tracy, my mind wandered to questions about what I ate, drank, exposures to anything harmful...that can be nerve wracking! I felt "singled out" and I wasn't comfortable with that. I also have never liked the spotlight so, needless to say, working in a huge corporation where news travels through the grapevine at lightening speed, I had to keep my chin up and walk through the halls looking brave. There were times I felt I was wearing the scarlet letter which brought out a sense of shame as that was my reactive feelings to stares and side steps. But having to experience something like that just makes you stronger. I was embraced by some, avoided by others. I saw people come out of the woodwork and bring me food for my freezer. I was touched to the core many times. I chose to roll out of bed and go to work to cling on to normalcy or I would have lost it. Now it seems I have come to befriend several women since my diagnosis who also have been diagnosed where I work.

I like your question. It's so interesting how one feels. I would tell my sister that I had never felt so many emotions hit me all at once. Emotions you didn't even know you had. Cancer does that to you.

Thank you for asking this.

 

Hugs,

Sylvia

roseann4
Posts: 994
Joined: Sep 2009

When I was diagnosed, I felt vulnerable.  I am a control freak so depending and needing doctors etc.was very difficult.  I felt I had done something wrong to cause it.  I didn't want to put anyone out.  I am usually the one solving problems and giving advise so I really hated that I needed someone else to tell me what was going on with my body.  It has been 4 years this week and I am so different and no longer feel guilty for getting cancer.  Just grateful for the love and care I have received.  What a journey!

Roseann

Bella Luna's picture
Bella Luna
Posts: 1569
Joined: Aug 2009

This is powerful, Ayse.I have to chew on it for a while.  Hope to get back to you with an answer.

PennyJ's picture
PennyJ
Posts: 31
Joined: Dec 2012

I do feel shame and embarassment whenever I get a call from the hospital wanting to know when I plan to pay my outstanding bills.  I have worked since I was 14 years old and have never failed to pay my bills on time until I got sick.  My husband is disabled and my son has a serious medical condition, so our medical bills were already pretty high before I was diagnosed with breast cancer (I was the healthy one!).  I was out of work for over a year due to complications and treatment side effects and was really lucky to have disability insurance and an employer who held my job for me.  I was doing pretty well with staying on top of things until just before I went back to work and then the bills got ahead of me.  I've talked to a few of the people we owe and most of them have been very understanding, but I just can't bring myself to contact them all because I am ashamed to say I just don't have the money to pay.  I know I will catch up eventually but I do get a sick feeling in the pit of my stomach when I sit down to pay bills and have to decide which ones are going to be late.  Sorry for the long post.  I guess I didn't realize just how bad I felt about this (what with the trying to stay alive an all) until I read your post and the responses.  Thanks for listening, I'm getting there, hopefully will be caught up in another month or two (until we get the bill for my son's hospitalization in December)....

SIROD's picture
SIROD
Posts: 2116
Joined: Jun 2010

Penny,

Please see your patient advocate at the hospital or cancer center when you have problems with medical bills.  You do not need to be ashamed of anything.  You should be commended as a wonderful example of a good citizen.  Everyone goes through hard times at one time or another.  

My son has a medical problem and back when he was younger, I would explain to who ever it was and was always met with understanding and help.

Remember one thing,  our country needs more good citizen like you.  Hopefully life will soon be easier for you,

Wishing you the very best,

Doris

 

 

Lynn Smith
Posts: 1265
Joined: Mar 2011

I'm sorry you're going through such hard times.I know most is paid by my insurance but now we have a $4500 deductible and it's hard.Never had those bills until I was dx(then insurance changed). Always 100% paid.We have a retiremnt saved up but hate to ever have to use it for my breast cancer.Besides we have to live however many years we have.My husband's medical is paid through the VA. No worries with him.Just me.

Anyway my sister was dx last year also.She was changing insurance companies and thought they would pay it.She hadn't been to a doctor yet for dx.Well she was told insurance wouldn't pay anything.They said her conditon was pre existing. The surgery was $75,000 and not sure what the chemo. She gets her bills and pays some every month.She got a nice divorce settlement but OMG what she has now she must live on it for her lifetime. However long that will be??I see her being so tight on her electric and keeping her heat down.I would hate to live like that.I worry about her. 

Her doctor sent her to another hospital for chemo.She thought they would take over that since a non profit hosptial but so far it's not happening.She does get her Armidex very cheap.She takes that daily.

You don't need this worry. I know my husband is retiring soon and we will need to buckle down big time. It's a worry when you're  fighting something for the rest of your life and wonder how will you pay for it????  

Do the best you can.Sounds like you already are. 

Lynn Smith

carkris's picture
carkris
Posts: 4505
Joined: Aug 2009

yes i would say i felt embarrassment, because I had no boobs. I am getting better about it. I have alwasy wanted control over my info, so did not go hat less, but I am not one who deals with attention or standing out well. I am not ashamed of having cancer, but  maybe what i may or may not have done to get it.

PennyJ's picture
PennyJ
Posts: 31
Joined: Dec 2012

I appreciate your advice and kind thoughts.  I do have a payment plan with the hospital where I stayed for complications (twice), it's actually my local hospital that has been the source of most of the grief about medical bills.  We have several much smaller bills there and, while I have been paying them down with every pay check, they've continued to call.  It hasn't all been bad though, the company that provides our oil said not to worry about the monthly payment plan, just to pay when we could and my coworkers collected money to help us pay for a new engine in our car when it died (halfway through chemo).  So we'll be ok, I guess the shame question just brought up some feelings I hadn't really realized were there.  You all are great, thanks for your care and support!

LoveBabyJesus's picture
LoveBabyJesus
Posts: 1650
Joined: Jan 2011

This is an interesting thread. I never felt ashamed of having this illness BUT I have felt incompetent in dealing with other people's emotions/reactions to my condition. 

I bought a very expensive wig when I lost my hair and today I asked myself why I did that. It's not like I went out often. Who was I trying to impress? Was it really me or society? I bought the wig because of my job. I didn't tell anyone at work I had been dx except my boss, HR and a few other people who are my friends. But I hardly ever wore the wig. Was I really ashamed? No. I was scared to face the reality. I think at some point I wanted to feel in denial. To feel normal. Exposing my situation to the world would have put me in a situation where I could not have a chance to hide. Everyone would know and I would be just that, a cancer patient (nothing wrong with accepting the reality, but one must do it one day at a time). Emotionally, I wasn't ready to deal with people's reactions to my illness. I didn't want to dramatize my situation more than it deserved it. I do think this is a very personal state of mind. I think it all depends on how comfortable you feel at the time, and how important it is to do what you want. Today, 2 years later, I feel OK telling people I had breast cancer. I trained myself to accept it and live with it. Never felt ashamed of it.

Here's another interesting perspective:

Yes, we live in the 21st century, but society is still very mean and ignorant. Why do we feel so ashamed? Is it because we feel guilty? I am not sure if any of you thought of this, but one of the most common reactions to having cancer is a sense of guilt - thinking about what we did to deserve this. And why do we think that? Because of society. Society has created an ideology perfect enough to help them cope with their own lives. People like to feel in a better position than the other: "better she than me". Is this what we feel ashamed of? This is not how I feel at all. No one deserves this. And it makes me angry that society has a convenient way of looking at things. I am reading a great book I recommend called "When Bad Things Happens to Good People". It illustrates my point exactly.

I think anything that we feel after diagnoses is a normal response from our brains and it's what make us all unique. A lot of it is a derivative of different ideologies society has created to control us. I think we will overcome these feelings and fears.

CypressCynthia's picture
CypressCynthia
Posts: 3873
Joined: Oct 2009

I am late reading this post but it looks like Ayse began a very lively and interesting discussion. 

When I was first diagnosed at age 33, I mainly remember feeling very betrayed by my body.  Until then, I had never really been sick.  I think there was a part of my psyche that felt ashamed that this was something I couldn't control.  Isn't that dumb?!

My gyn, also a family friend, gave me some good advice.  He had just been very sick himself and said that it was very hard to let go of control, but, when he did, a burden was lifted. 

aysemari's picture
aysemari
Posts: 1586
Joined: Dec 2009

I kniw I can always come to you to sort out my twisted mind (;

 

I honestly didn't I felt it until I saw that post 

and reading your posts makes me understand a lot.

Hugs,

Ayse

jojo2
Posts: 28
Joined: Apr 2013

Have been an RN for 44 years. I know that guilt is taken to a new level by most woman. And at least in my case, being a caretaker and a Catholic compounded this even more.  But, my upbringing taught me that I was pretty wonderful and a very strong woman so I did alot of mental processing through the years on this subject and rejected much of it. I think we feel guilt because most of us want to make a positive difference in the world so we multi-task like crazy and hold ourselves to very high standards. Hopefully we learn to have realistic expectations for what we can accomplish without neglecting ourselves.  We also have had to work on what we will accept and incorporate into our philosophy about our personal appearance and what we will do to get and attain it.  But I think one of the most important arms of this process is if you really care what people think of you. Being overweight with early gray hair, made me decide if people didn't like it, they didn't have to look. Why should I care what someone, who has nothing to do with my life, thinks of me ? Why would I give my personal power to a stranger? And if my friends are critical, are they really friends? I will be my own judge, not strangers!  Another facet of this, is healthcare policies that although unproven have started to blame the victim for their illness. This is clever, dishonest way to parse out  funds and falsely justify denying healthcare to millions.

I think your feeling of guilt is more that you couldn't control things enough to prevent your cancer. Which of course is impossible, but makes us feel weak and betrayed. I think I felt differently because my Mom had BC and I just knew I would have it some day. The only guilt I had was putting my family and friends through the worry. My daughters immediately said don't blame yourself, blame the monster that is cancer. So I'm just asking, could any of us really have prevented this from happening? The answer is NO. People who are perfect physical specimens still get cancer. Actually we are amazing for going through the pain and suffering, and coming out stronger and better for it . Growing stronger mentally, physically and spiritually and changing our priorities because we really know what a gift our life is. We have to be strong and not be our own worst enemy. If we and our loved ones think we look great, even though we're flat, bald, chubby etc. from our treatments, surgery and meds then we do. And we are more thankful than most, just to be alive. We are survivors watch us shine.

jojo2

TexasCharlie's picture
TexasCharlie
Posts: 74
Joined: Nov 2012

There has been a wide range of emotions from my perspective, even a little shame, but not a lot. I quit drinking 25 years asgo quit smoking 3 years ago, went walking a mile or 2 every day and have good chlesterol levels and good blood pressure. I had been controlling my diabetes with diet too. My families on both sides are long lived with no history of cancer. Then I get cancer! What did I do wrong. Oh I went through the "what ifs" too. Yeah there was a little shame, shame that I let down my family. Now instead of fixing everything I had to be fixed.

And there was a little guilt but I have come to terms with the whole thing. It is all beyond my control and in God's hands. All I can do is what's in front of me go to treatments and follow doctors orders. 

TexasCharlie's picture
TexasCharlie
Posts: 74
Joined: Nov 2012

sorry, double post!

hope67's picture
hope67
Posts: 165
Joined: Apr 2013

I was thinking hardly why is that. I think it's tied to stereotype that cancer is something you get if you let it happen. Has someone already told you that? It's something that really annoys me. Just yesterday I had a big arguing with my friend who said to me that in life happen things we choose for. Maybe it's something true about it, but it's far from being so simple. Otherwise we would all choose to be healthy and happy, wouldn't we? Life just doesn't happen that way. It's been a lot of written about how illness happen if you are not listening to yourself and don't live in accordance to that. And I think that my guilt or shame came from that. Because I am thankful for this topic and glad it's not only me with all these thoughts and feelings.

Carmen

Teju
Posts: 1
Joined: Apr 2013

I was diagnosed with BC in November 2012, and am fortunate to have very supportive family and friends who helped me through radical masectomy, chemotherapy and now radiation. I readily admit to the disease to the people in my life -friends, strangers yet am very reluctant to discuss my cancer at work ( they still dont know!!).

Is it shame or not wanting to be treated differently? my biggest fear is being subject to pity.

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