feeling sorry/sympathy/pity survey

leaf · February 2008

leaf · February 2008

Hi there. I am not posting this necessarily to get sympathy, but to inquire how you, with LCIS and nothing worse, feel about people giving you sympathy/feeling sorry/pity to you.

I know some women with much worse prognoses than we have here are adamant about not wanting pity. I would like to know people's feelings about this.

**ASSUMING that the person giving you sympathy/pity/feeling sorry for you is genuine, sincere, etc** (even if they don't always manage to say the thing you would most want to hear, and sometimes say the wrong thing)

how do you feel about people expressing sympathy/pity/feeling sorry for your situation (including if you have multiple reasons for going through a bad time, not just LCIS.) What kind of reaction would you most want the other person to have, and, if you can ascertain, why?

I know we all are different.

lucky32 · February 2008

Hi, leaf,

No one except my most immediate family knows about my LCIS, and they don't really understand it, so I don't get much sympathy in that regard. It isn't that they don't care, just that the whole thing is so incomprehensible to them, I think. Also, I don't discuss it much even with the people who know, so they are probably taking their cue from me and not bringing it up.

My husband knows the most and is the most sympathetic, even though he doesn't understand it either! He has always supported my decisions about treatment and is always more than willing to rearrange his schedule to accommodate my appointments. He is the best, and I feel very fortunate to have him.

In general, whenever I am in a situation that might cause others to feel sorry for me, I much prefer that they just say quietly, "I'm thinking of you," or something like that. If I were to develop an invasive cancer, I think I'd like people to offer specific, practical help. For example, "I'm bringing your dinner tonight. What time would you like to have it?"

It will be interesting to see what others think.

kcq · February 2008

I get crazy sometimes. For the most part, I dont want sympathy, but I do want help (when I need it). My friends and family have been wonderful. But, I want to be normal and do things on my own. However, "normal" just isnt what it used to be. So, now, whatever I can do, I do. Whatever I cant--I ask help. Because sometimes, I get offended if people see me struggling and dont offer to help. So, you cant win for losing! haha---I guess my family needs to read my mind. So, I guess I dont want sympathy as much as I want concern and compassion. I certainly dont feel sorry for myself.

Hattie · February 2008

I bet most people have no clue about what having LCIS is like, and women who have that dx feel differently about it as well.

I am in a different situation, but I just try to figure out the person's intent--are they sincere? caring? loving? frightened? I just accept their comments, often with a "thanks".

Take care,

--Hattie

leaf · February 2008

Thank you for your responses so far.

Does the term 'pity' imply that someone is not taking your situation seriously enough?

I have lived very independently, but am accumulating more medical problems (besides LCIS).

A friend who is single, 58, and doesn't have much support otherwise, and lived a healthy life, just got diagnosed with pancreatic cancer, which as you probably know, has a poor prognosis. I'm trying to help and support her. I've tried to get her to open up how frightened I imagine she must be. She is quite aware how serious her situation is, and is trying to set up support systems. I try to spend a lot of time listening to her.

I'll be going with her to her first oncology appt on Monday. Luckily she's going to my oncologist, who I think is the best she could get under the circumstances. So I guess I'll be getting a first hand view of cancer.

Kimber · February 2008

leaf,

I HATE negative attention. I don't want anyone else to feel bad, especially about ME. I kindly refused the offers of bringing dinner into my family (much to my husband's chagrin!) when I had my lumpectomy, and I just asked for prayers and positive thoughts. I am not good at relying on other people for help, but found an amazing outpouring from people I don't know very well (moms of my kids' friends) and a lack of correspondence or interest from people I thought were my friends. But my favorite line of all is when my in-laws called to say "just wanted to say 'good luck tomorrow' when I was going in for surgery. Good luck with what? Falling asleep? Staying asleep? Waking up without nausea? Good luck on your pathology? They are the ones I found least helpful when I could have used them the most, although I have been there for them through every health crisis they have had....

I am (I'm repeating myself) amazed at the people who step in and amazed at the ones that don't. But Oh well. People have to do and say what makes them feel best about themselves. Life has changed for me and I guess I need to accept that and accept my "new normal" ~ a term I have seen used here a lot and fits the situation. And I guess friends and family take cues from us.

BTW, how the hell long does it take to recover from a lumpectomy??? I had "the size of a large apple core" (in the words of my surgeon) removed and I am still having soreness and pain. Maybe the seroma is making it worse. The surgeon said yesterday that my "shark bite" might leave a dent and "only time will tell". Anyone have any input? Give it to me, I can take it!

I found the best person for me to talk to was my sister, who has survived an invasive breast cancer, chemo, rads and tamoxifen all on her own while raising 4 children all alone. I sent her a really beautiful "survivor" necklace that I found made by a local artist, and she told me to get one for myself so we could wear them together. I do not feel like a survivor ~ I did not go through the year of hell that she went through with chemo and rads (and during that time we buried our precious mother from metastatic breast and colon cancer). I only endured 4 mos of uncertainty and differential diagnoses and finally I am out on the other side and taking tamoxifen, my protector. I went from saying "lob these puppies off and let's get a fresh pair" to thankful I still have them and there is something I can do to keep them, for right now. They ain't so bad after all...

Kimber

Anonymous · February 2008

Kimber--I took it easy for a few days after my lumpectomy and was back to normal activites in less than a week, but everybody's different. I did have an issue with stitches that wouldn't dissolve and kept "backing out", which delayed my healing and made the area very sensitive for quite a while. I have a little indentation, but it's not too bad, and the scar has faded very nicely over time. Considering that your mom and sister have had bc and you have LCIS, have any of you had genetic counseling/testing? And don't for one minute think you are not as much a survivor as anyone else--you most definitely are!!!

Anne

Kimber · February 2008

Anne,

Yes, I am BRCA 1 and 2 negative. Otherwise I would have been off to PBMs and ovaries out.

Seriously, I am not a big baby - I have had both wrists and one elbow completely reconstructed (I was a volleyball player) we are talking about grinding down bones and replacing missing tissue with either graphs or surrounding tissue, but this lumpectomy has kicked my butt. I went through 4 rounds of IVF and have had 2 ectopic pregnancies, (1 was an emergency surgery, 1 I used methotrexate) 4 miscarriages and all kinds of other stuff I can't remember right now. Adopted 2 children 15 mos apart and buried my mother after yrs of her having scleroderma, osteoarthritis, colon cancer, breast cancer, a heart attack due to a severe heart murmur and a valve calcification. and she had trouble all 6 of us giving birth to us.

Anyway, I digress.

Kimber

liveit56 · February 2008

The only ones that know about my LCIS is my family and my doctors.

My family does not pity me or feel sorry for me but they understand it is serious and that I need to be on top of my checkup's and they are supportive of me and they also know that it is not cancer but a little insight that it (could) become cancer.

My Mom has made it through uterine cancer and my father had melanoma of the eye and had it removed and now skin cancer and my husband bladder cancer so, there is no room for pity...they are my inspiration and my hope that if it ever does turn to cancer I can fight it and win and they are there for me.

moogie · February 2008

It's a good question.

Before I had the breast issues, Lcis and mastectomies.....I had clocked time in a wheelchair for other physical conditions, and had lived for years with other serious disorders from childhood. Some people who knew me well, were treating me like JOB!!Like the LCIS was the " last straw".One person told me" I really didn't think anything else could happen to you....you have had such bad luck!" Understandable, but I had health issues all my life and tried always to keep my days as normal as possible and lead a "normal" life. I was annoyed at another medical thing to deal with, but I did not see myself that way. The reaction says more about the other person's fear................

I told very few people about my diagnosis because I learned early that most folks are terrified of illness, don't necessarily understand complicated medical issues, and cannot truly relate to my position unless they or a family member have been here.

Hope you are doing well. Leaf. Maybe those " pity" people just do not understand the issue, and are responding out of their own inner fears..................................Seek out positive people who see all the great things you have in your life and support you in them. That's what helped me. People who can laugh with you are the best ones to hang with!!!!

Moogie

femme · February 2008

To add my two cents to all of this, I hate pity. But I am very capable of being touched when I see other people put out their most generous, good feelings and deeds in a desire to help another fellow human being, including me. It makes me believe in the basic goodness of people. I try to take the same gesture of good will , remember it, and give it back at some later point to someone else who needs help.

I try to watch my wording very carefully when expressing compassion. I have found people who meant no harm, were trying to help me, and have said something that stayed with me unexplainably, their words making me sad.

Mostly I try to make others feel better after talking to me. Pity makes me nervous, so I try to jump over to the positive aspect of the subject as quickly if I can.Of course I respect that people will express their concern in their own style, prayer, positive energy, good deeds to others, making good art and or creative things, baking etc. I try to expect nothing And that way I am always elted and touched. I always say "thank you."

femme

leaf · February 2008

Hi, Kimber, sorry you are having a hard time after your lumpectomy.

It took me about 9 months for my breast pains to really quiet down. For me, tiny ice packs and compression really helped. The surgeon operated over by breast (I later found out), inches away from my 'area of concern', at least from my mid-deep calcifications to right under my nipple. (I wear a B cup.) My 'dent' filled in almost completely. I'm sure it also matters how much breast tissue was removed in comparasion to your breast size.

I guess I am also trying to come to terms how to help my terminally ill friend.

I think moogie has a good point here-people are afraid. Maybe they are afraid of feeling the strong emotions that might come, and knowing that something might happen to them, the "Just World Hypothesis" (the false belief that when bad things happen to someone its because they deserved it.)

And I think femme has an excellent point-we have to be very careful what we say. It can be hard to say the right thing, and I think that sometimes nothing that anyone could say will be the right thing.

We are all different, too, so maybe the right thing for one person at one time may be the wrong thing for a different person (or the same person) at a different time. Feedback welcome.

Hattie · February 2008

I try not to be hard on people who probably mean well--do I know what I want to hear? do I know what others want to hear? do I say or do the right thing? not often.

In my experience, sometimes i was surprised by what felt right to me--when people used to say "Oh, I'm so sorry" I felt pitied but when my doctor held my hand and said "I'm sorry you have to go through this" I was touched (of course then we layed out the plan--action is always good.).

Leaf, just letting your friend talk and listening is huge. Not many people can hold someone else's fears and pain and then release them. Little things are nice too--trashy magazines, a cartoon, a song, a quick foot or hand massage, flowers, a soft pillowcase, a funny video (movie or you-tube), a little treat of any sort--something to say, i'm thinking of you and I'm acting on that!.

Some people like to do something special with their time. Some people like to review what they've done in this life.

About LCIS, or not doing chemo, or whatever--I don't care where you are on the cancer spectrum, didn't you think you were going to die and haven't you had to think about how to deal with the cloud over your head? I'm thinking we all can answer yes.

Take care,

--Hattie

leaf · February 2008

Thanks so much for your comments, Hattie! I am coming to the conclusion that my (almost certainly) terminally ill friend is handling this by denying her feelings. (I just tried to bring up the subject of fear once, and the response was a change in subject or equivalent, so I won't do that again unless she wants to go there.)

I didn't realize that many other people choose to do deal with their terminal illness this way too. Its not the way that I would handle things (not by choice, just by personality makeup.) I gotta realize I really, really need to let her be HER, and let her handle this in the way that is right for her.

I really like your suggestions.

Thanks again, Hattie!

otter · February 2008

leaf,

I'm not in the LCIS group, but I've been keeping track of your sorry/sympathy/pity survey. I think what the responses show is that everyone is different; and everybody has her own coping strategy.

I still don't know what kind of reaction I like best. So far, the ones that make me most comfortable are from friends who write long, chatty emails or notes. They'll comment very specifically on my situation, relate it to their own situation (like a female friend might say, "Wow--I guess I should schedule my &*##! mammogram after all!), and then just talk about stuff of mutal interest.

I've found it's less helpful to me if they just say, "Hey, hope you're doing well!" and then sign off. It doesn't make me feel much better if they say, "It's so great to hear your nodes were negative!", or, "We're so glad the prognosis is so good!". Sure, me too; but then, why am I worrying about my Oncotype score and maybe needing chemo??? And, why does each achy joint or belly cramp make me think, METS?????

Yet, the absolute worst is the pity: "Oh, my gosh, I'm SOOOOO sorry for you!"; "Oh, that is such awful news!"; or, "Oh, you poooor thing!". I even heard from a close family member the other day: "I told so-and-so about your cancer, and, ohhhhh, she took it SOOOO hard!". Great. I feel so bad for her.

My problem is that my close family members thrive on pity. It is not acceptable to act strong, look for the brightest path, seek solutions, or offer encouragement. The correct reaction is to ooze sympathy, preferably in the hushed tone you might use while viewing a casket in a funeral parlor. OTOH, those same family members demand pity when they're having troubles. They are pretty much handicapped by their emotions. It's the only way they know how to react, I guess.

This is such a difficult place to be in. I know now, in retrospect, that my reactions to other people's troubles have probably been inappropriate. But, how do you know what to do or say, when everyone's needs are so different?

otter

femme · February 2008

Otter,

I had to laugh as you decribed your family and their "coping" methods. the reason it was so humorous to me is of course we all have eccentric, quirky, relatives that we think are from another planet. and we all think our whacky families are unusual, embarrassing, and stark raving nuts. It is so obvious that "normal" is a Brady Bunch concept. What can we do with our whacky families? just love them I guess and try to forgive them because to tell you the truth; They/wee are/ were the new normal.;;....

Scary, isn't it?

femme

otter · February 2008

femme, you are right. I just need to get over it, and accept that my family members are doing the best they can. They hurt for me, and the only response they know how to give is pity. They think it helps (I guess) if they show that they feel sorry for me.

OK. I need to switch over to the jokes/games thread I think.

otter

leaf · February 2008

Directed at whomever wants to reply:

Does it feel some people won't support you to be strong? Or you feel some people don't want you to be strong, and put you in a not-adult place? Or something else?

Do you think that pity has an aspect of not being genuine or being distancing? What are the parts of pity/feeling sorry that make you uncomfortable? Is genuine sympathy uncomfortable for you?

Does the offer of help with something difficult with make you uncomfortable?

I know we are all different, and what is comfort for one person is not for the next.

femme · March 2008

otter,

Any, actually almost any, honest discussion pertaining to each individual family style of dealing with adversity, probably should be relegated to the jokes/ games thread. There are exceptionsI know, but they can usually be found under "fiction" at the library.

I enjoyed reading your post and thank you for your honesty!

femme

Hattie · March 2008

I just returned from shopping and at the store someone said, sadly, "God bless!" to a woman in a wheelchair. The person saying this did not say it to everyone. The person in the wheelchair did not respond. This was not a helpful comment. Think it if you need to, but saying it seemed rude to me. Didn't anyone else need blessings?

It made me think of other comments, such as "You're so brave" (not really but I'm still alive, not dead--does that count?) There are so many comments that are sincere in their way, but say "Whoo hooo, I'm not in your boat and you are less than me at this point."

Having said that, everyone is different. And, I felt differently, depending...

When I was dx, my sister gave me several frozen casseroles. I passed them to neighbors. I wasn't sick and could cook and take care of my family, right? Later, my husband built me a window seat in our bedroom. My other sister said, "What,you are not going to be in bed receiving visitors, are you?" I didn't know, I thought maybe yes, in my last remaining days. My views kept flip flopping, so I finally realized if i didn't know what I thought, no one else could be expected to know either.

Pity is different than saying I am listening. I feel for you, It says better you than me, and you are not up to the challenge and you are less than me. Way different than sympathy, which is saying, I'm trying to feel what you feel but i can't so I'll try to put myself in your shoes, and I'll listen to you.

Help-some people say yes and some say no. Respect whatever.

Can you tell this is a topic I've being thinking about for a while?

Take care,

--Hattie

femme · March 2008

Thank you Hattie.

femme

leaf · March 2008

You have been helpful to me, Hattie. I know I will not always say the right thing to my terminally ill friend, but your insights really help.

Pity contains an aspect of "I am better than you, you cannot handle this, and I'm glad I'm not in your shoes."

I want, as much as I can, to follow the directive given to doctors, "First, do no harm." I know I've already said things that are hurtful to my friend, but I can try to do better.

Thank you once again.

Further comments welcome.

otter · March 2008

Hey, leaf--

Please don't be offended, but are you a shrink? Your questions (above) are so insightful. You really got me thinking.

No, I don't think pity necessarily means people are being disingenuous, or are glad they aren't in my shoes. At least, I never thought about it that way, until you mentioned it. I guess socially and culturally, people have expressed pity for those who were in some way beneath them.

I think--at least, I hope this is true--that my family's feelings of pity are honest and real. I think they might be feeling that same horrible, crushing disappointment; and finding themselves in that same dark place, that abyss, that I experience periodically.

The difference is that I can't survive in that dark place--I need to fight my way out of it. I need to think that I can beat this thing: My treatments are going to work. I am going to be healthy. I will be able to do those things in my life that I've been planning all these years. I want to have a future....and, by gosh, I WILL.

To fight my way out of that dark place, I need to be able to suppress the feelings of hopelessness and despair that slip in on me once in awhile (less often now, than in the beginning). I guess my family members have not been able to suppress those feelings, or cannot suppress them. They wear their emotions on the outside, for everyone to see; whereas I try to keep mine on the inside.

I think pity is a deep, raw emotion--a reaction that often reflects lack of control.

It takes courage and forethought (planning) to know what to say, and what not to say, to someone who has just been dx w/ BC. How about, "Jennie, I heard you were thinking about planting some daffodil bulbs before this happened. Would you like me to come over on Saturday and help you with that?" Or, "I know you like crime/drama movies. I found a really good one at Blockbuster--would you like to come over and watch it with me tomorrow?"

Speaking of those daffodil bulbs.... I'll talk to y'all later!

otter

femme · March 2008

Otter,

You are wonderful. I am in a very rough place now and I needed to hear it all articulated the way you just did.I can't stay in this very dark spot and be a decent human being.

One of the things i've been thinking about my garden, a tiny patch of garden behind a NYC brownstone. i can't wait until it warms up enough to plant some violets. Would you mind planting pansies instead of daffodils?

thank you, it will work out, we will come to the other side of each of our health problems .

femme

leaf · March 2008

No, otter, I'm not a shrink, though I am in therapy. I'm trying to figure out how to better deal with my friend who has a cancer (not breast cancer) that has an extremely poor prognosis.

She doesn't want to talk about how she is feeling. I want to honor her choices, of course, and I do not want to hurt her, as much as that is possible.

I know if I were in her shoes, I'd be hysterical, or crying, or deadened, or something. So I was trying to speculate why she might be denying her feelings.

So, otter, pity from your family is sincere - they really do pity you - but that is a dark and scary place to be? You sound like you are a fighter, that maybe you handle the threat/fear? with defiance. If you followed the way your family acts - with pity -, you would be 'swallowed up' by the threat? I hope I am not offending you by speculating here. Please feel free to say I'm completely wrong.

It sounds like distraction really helps, too?

1965sally · March 2008

Hi, I was just looking around and saw this thread. Leaf, I too had a friend with terminal cancer who didn't want to talk about it. We found out after she died that she had asked the doctors not to tell her how bad it was, just to tell her the minimum necessary information and keep on trying to treat it. She had been battling this for years and there was one period where she was "considering her options" for well over a year, with all her friends trying to pull her head out of the sand for her. I knew that she felt harassed by this and I decided to be supportive in a different way: follow her lead, respect her (non)decision. Then when she had a recurrence later that could have been due to the long period of delay, I felt like sh**. But she told me at some point that she really appreciated my respecting her way of handling it. I felt okay knowing that other people had confronted her so I didn't have to. What she wanted from me was mainly distraction, occasionally supportive listening with no advice. Our last time together was a tourist weekend together, which totally wiped her out but she was determined to do. I was so stressed wondering if I was making her push herself too far, but later she was clear that the weekend was a real highlight for her and she didn't regret a thing. She said she didn't know how much time she had left and she wanted to do and see as much as she physically could.

With your friend, if it is indeed terminal, then I (IMHO) would say totally follow her lead. If you think she's in denial about something that could save her life or save her having big regrets on her deathbed, it may be worth bringing that up but you may also risk the friendship. You have to decide what is the most caring thing you can do, but you also have to live with yourself later. Do you have mutual friends or acquaintances you could talk to about it? In any case, she probably knows that you are there should she decide to talk about her feelings, and that's enough. Her feelings will probably roller-coaster and you may still get your chance. Keep on listening and spending time with her.

Hope this helps! One person's experience.

leaf · March 2008

Thank you so much, Sally. I know everyone is different, but its good to hear from people who have 'been there'. She just got diagnosed in the beginning of Feb, but studies say the median survival vary (depending on what treatments if they work) vary from a median of about 4 months (I've heard some stories of people who only lasted 3 weeks) to 18 months (if multiple therapies ALL respond, which almost never happens.)

After talking with my biofeedback guy (a psychologist) he said his mom was in denial the entire time before she died, and that was OK.

So that's what I'm doing, trying to follow her cues. She is anxious about some medical issues, and I'm trying to reassure her about her decisions. Her choice would leave her with less risk of some side effects.

She's not in denial about the severity of her problem, she just doesn't want to talk about how scared I imagine she must be feeling.

I'm trying to support her about her decisions about therapy, which isn't very hard since they're close to the ones I'd make if I was in her shoes.

I think your suggestion is the best approach - to be there as often as I can, listen to her, to NOT be judgemental, and if she decides to talk about her feelings, then that's great.

Thank you again, Sally.

1965sally · March 2008

That all sounds encouraging, respectful, and genuine. I hope the rest of the journey, whatever it is, goes as well as it can.

Hattie · March 2008

Your presence is a present, leaf. She's finding the way she wants to do this, and denial has its perks. There's no manual for this, for you or her!

Here is an essay about what median survival means (you may already know this and your friend may not care but in the author's case, he far exceeded all expectations, against all odds. It's not simple to read, but it does explain the stats in a positive and hopeful way. It's not something everyone would be interested in, but here's the link in case it applies http://cancerguide.org/median_not_msg.html

(sorry, since the boards changed I haven't found how to do links again).

Maybe she is not as scared as you are. I lost a friend recently and she told her docs when they said they had nothing for her and her end was near, "Kind of exciting, isn't it?" (with a smile no less).

Take care of yourself. too, leaf.

Take care,

--Hattie

leaf · March 2008

Thank you so much, Hattie and Sally.

I'll print that out for my friend if she wants to read it. (The link worked fine for me.) I'm glad she isn't denying the seriousness of her condition (she just finished establishing her trust and advanced directives); I'd be much more upset if she hadn't.

Yes, you're right, Hattie. She may NOT be as frightened as I. (I have some anxiety issues.) That's a wonderful comment by your friend.

I had a relative who really did NOT want to be in the hospital, and when she got a clot in her lung and was brought to the ER (she couldn't breathe well), the doctor told her, "You know, you aren't going to get any better." (Of course, he was trying to tell her that she was going to die.) He left the room shortly after.

Her immediate response to her daughter was "You know, that must have been really hard for the doctor to tell me that." Her daughter said then she pretty much gave up, and died about an hour after that. That was just like her-always thinking of others.

Some times you feel like you're so honored to have known some people. You know that you will never be as good as what they do well, but you can try to use them as a role model.

And I *so* appreciate your help!!

feeling sorry/sympathy/pity survey

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