Telling friends my diagnosis has had weird results
I feel like my friends aren’t acting appropriately, they don’t now what to say and are generally being distant. I already feel isolated and alone in this but having friends I’ve known since high school steer clear of me is really hurtfull. Is this common
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People respond weirdly. I ended up comforting some friends because they were sad & upset about my cancer. Others have been more distant and I suspect it's because they're afraid, don't know what to say, think they'll catch it somehow. And I've had people try really hard to find out what I did wrong to get breast cancer.
Hint: Nothing. I didn't do a damn thing wrong to get breast cancer. My cells just mutated.
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HI deweygirl19, and welcome to Breastcancer.org,
We're so very sorry to hear of your diagnosis, and what you're experiencing telling friends. However, we're really glad you've found our amazing Community, full of others who know exactly what you're going through and are happy to be here to support you the entire way! We're all here for you.
We know it's difficult trying to understand how people react to your diagnosis, but we can assure you that as unfortunate as it is, it is normal for people to not know how to react or what to say, so they find avoidance the best reaction. Of course, it's hurtful to you, and we're so sorry for that!
This page on Talking to Other Relatives and Friends from the main Breastcancer.org site explains it well:
"Understand that family and friends may not respond the way you want them to. Be prepared for the fact that some people might say or do the wrong thing, not because they are unkind, but simply because they do not know how to respond. They might look for reasons why you got breast cancer, such as diet, exercise, or lifestyle factors. They might offer up clichés such as "Be strong," "Stay positive," or "If anyone can handle this, it's you." They may want to tell you stories about other people they know who have had breast cancer. Or they might start avoiding you entirely because they don't know what to say or do. Try not to take any of this personally. Instead, focus on family and friends who can give you the kind of support you need."
We hope this helps and that you find support from our members here soon! Keep coming back and asking questions -- we aren't going anywhere!
--The Mods
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deweygirl, all that the moderators just said! People don't know what to say, so they either say nothing or saying something that is unintentionally hurtful. FORTUNATELY not everyone is like this!! And fortunately, as you go through this you will find that most people are very kind, and people you don't know or barely know today will become everyday heroes in your life. That helps take the edge off those who you know well, and were counting on, who for whatever reasons can't be helpful to you.
Remember, too, that how they react is how THEY react. It's not you. It's them. It hurts, absolutely, but it isn't personal. It's them.
Wishing you many blessings and an easy path.
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thanks everyone, glad I have this forum then! Feeling very isolated, as I’m young and have young children, not something friends or I have experienced in our circle. I work in radiation oncology and thought I knew a lot about cancer, it’s completely different as a patient!
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thanks so much for your words, it really gives me perspective
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I have primarily been forthright, upbeat, and hunerous with friends and coworkers and it has really helped to set the tone. They can ask questions without feeling like they need to talk in hushed voices about it. I don't want gushing, I want "that sucks, what's the plan?".
I myself don't know what to say to people in my situation, so for me, setting the tone shapes the entire interaction.
It was a bit hard at first to share, but after a few weeks, once I was comfortable talking about it, I found it helpful. I have probably 50 coworkers keeping different levels of tabs on my progress depending on how well they know me. It is really a huge community of unexpected support.
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Yup, many have no idea what to say and are afraid of saying the wrong thing, so they do nothing at all. Most of the people I told responded with 4 letter words, lol, it was honest and fitting. You’ll find out a lot about people and some relationships will change but keep your hope and try to find the good in everything. Good luck!
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Sometimes I wish I never told anyone. I feel like it costed me my job and some of my friends. On the other hand, I reconnected with others that have this disease.
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Telling certain people also makes them have to think about the threat of cancer, and it terrifies them: you remind them we are all mortal. In reality it is another disease, like diabetes, or heart disease and with the right tx can be reversed, often permanently, so we have to try not to give it too much power. It's hard in the beginning, I know!
2 of my friends were scared of losing me--like I was terminal or something (unhelpful attitude you can imagine) and ended up very needy and wanted me to reassure them constantly--when I was the one who needed reassurance that I wasn't going to die! I finally had to tell them to call my husband if they had questions about how I was doing, at least for the first few months. I didn't have the energy to reassure them or keep telling them about tx, obviously since I was in the fight of my life.
And yes, I talked a lot to women who had already gone through this, and they were a big help, very reassuring, even recommended tx and great doctors that I wouldn't have known about had I not reached out to survivors.
Claire in AZ
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Most people really want to be helpful and supportive, but they don't know how to respond...so they end up pulling away a bit. And yet at the same time, you may encounter a couple of people who totally step up and surprise you in amazing ways.
This online community is great. If you can find a local in-person support group, too, that's even better. Hang in there, sister.
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I had some of this as well. It is hurtful, but I know it is because most people do not know what to say and feel helpless. My best friend almost disappeared initially. I suspected she just did not know what to say so I finally texted her once my surgery was scheduled and asked if she could bring dinner over on surgery night (she loves to cook). She literally drive right over so we could chat. She said she was so sorry she had not contacted me, and that she had to try to get control over her emotions and was afraid she'd upset me by her being so upset. We had a great chat, and things have been back to our old best friend ways. She had felt so helpless, and I gave her a way to help. She then set up a meal train and helped coordinate others to drive me to chemo, etc.
So sometimes people do not know what to say. They feel scared and very helpless. Kind of crazy that we end up having to "help" them deal with it, but I found that asking a few of them for "help" like meals was mutually beneficial...they did not feel helpless, could come see me to chat and see I was still "me", and I got a few nights off from cooking at times when it was beneficial.
Hoping your friends come around as well. And I agree with others that you will find a whole other huge group of support from women who've been there, and truly "get it".
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I experienced this more with family than with friends. My friends were quick to step up and do what they could to take care of me/us. My siblings, on the other hand, reacted weirdly. We're pretty close, although we live far apart. My sisters, who I really thought would be more comforting and concerned, basically ghosted me for awhile. My brother, however, called me weekly, crying "Don't die on me! I can't bear it if you die! I'll kill myself!" I finally had to set boundaries with him because I just couldn't handle shoring him up and making him feel better when I was going through chemo myself.
At first I was a little miffed that my siblings didn't react the way I thought they should. But then I settled down and realized that they were just scared. We have lost many family members to breast cancer. I have 2 gene mutations that they have a 50% risk of having. No wonder they didn't want to talk about it! They were scared for their own health and lives.
Now I'm 4 years NED and feeling great. I forgave them and let it go. It is what it is.
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I didn't tell anyone but my sister individually. I only told her because she wanted me to help clean out our late mother's house, and I had to tell her I couldn't. Everyone else, I made a jokey FB announcement the day before surgery - and again with the re-excision, and again with the nephrectomy. Maybe three times in three months was too much, because except for initial "OMG" type responses, I never heard from anybody. Oh, one cousin called when my dim sister got hold of the wrong end of the stick and told him I was dying - but she never asked ME how I was.
At this point, if I get another new cancer, or a return engagement of one of the previous visitors, I'm keeping it to myself except for my husband. Screw the rest of them.
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Here's a scenario for your advice: this weekend my husband and I are going to visit his large family. As in many families, there is a range of personalities. Though I am thrilled with my 1/8" stubble finally growing on my head, most people would consider me bald. I quit wearing hats and scarves a few weeks ago. Almost none of his family members have seen me like this.
There are a couple of people who are likely to say stupid things to me about my lack of hair, in poor attempts at humor. I'm thinking about how to respond. Any recommendations?
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My family was pretty supportive as were the friends I told, but one more distant relative kind of went silent. I was surprised because I had always thought she was more socially well versed than me but oh well.
No hard feelings towards her.
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Give them the Miss Manners blank stare and murmur "why on earth would you say that?" then wander off and get a glass of wine.
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edj3, oh, if only there would be wine...
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In all seriousness, you don't have to pick up what they're setting down, even with no wine. Choose to not participate, just disengage. I practice what I preach, got a family that puts the dys in dysfunction.
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Mountain -
They selll T-shirt’s on Etsy that say Bald is Iconic. Wear that and if anyone says what’s with the new hair do -say
1. It’s hot girl summer . I was hot so I shaved it off.
2. Guys shave their heads all the time -I decided women can too
3. It all started on a Saturday night at this bar called the One Trick Pony...
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I'm so sorry you have to be here. Personally I found that none of my friends and family reacted in the way I thought they shoul do it. It bothered me that they comforted me, it bothered me that they ignored me, it bothered me if they talked about it and also if they didn't. Then I realized that the problem was that I was not able to accept my condition. Give yourself time and give them time, everything is very recent. You will see that things will improve. This community is fabulous. HUGS
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MountainMia, if someone says something about your hair, how about looking intently at their hair for a few seconds, shake your head, and say "You know, my hair was starting to look like yours, and I knew it just had to all come off."
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My sister pretty much disappeared when she found out. Breast cancer is rampant in my family (my mom and both of her sisters had it), and I'm guessing that she's scared it'll happen to her as well. I saw her this past weekend, at my niece's wedding, and she acted like nothing was wrong. I let it go. I have too much to deal with right now!
One of my closest friends suffers from severe anxiety and agoraphobia. She rarely goes out of her house. At one point she said to me "I may be crazy but I'm glad I'm not you." That comment (via text) knocked me sideways. Here I was, going through chemo, and still going out to meet with friends for coffee when I felt up to it, visiting with my grandbaby on a regular basis, and just continuing to live life. I was so upset that she said that. I later found out that she is an alcoholic and I'm guessing she doesn't remember that comment. In the meantime, I continue to live life!
And the thing that really floored me, is that so many people I barely knew stepped up and took care of me - meals, drives, coffees, texts, prayers, positive thoughts etc. I'm grateful for all those that made things better for me. My mom and I have become a lot closer because, let's face it, she can relate! It truly is a mixed bag when it comes to outcomes of telling people your diagnosis, but I put a lot of it down to their own fears, and/or not knowing what to say.
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All of my friends were very supportive and called all the time --- except one who was a breast cancer survivor -- that surprised me. However, my only sister had been mad at me for about a year, but you would think she would have gotten over it when I emailed her that I had BC. No response at all. Can you believe that? Her husband is a retired oncologist - he could have been very helpful. I think my sister must be mentally ill - her response was not normal.
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yes, breast cancer is alienating. I would say it even gets worse over time. People are understanding and sympathize during diagnosis/treatment but then expect you to be done and moved on after it... Some men that used to have a crush on me no longer do, my mom (who had breast cancer before me) groaned when I mentioned frustration over cosmetic flaw on one of the sides of my chest, now people's faces go blank, they don't want to hear about it. I have a friend who got diagnosed 1.5 years after me, she won't talk to me once she was on her path to treatment, I think she wants to do a lumpectomy and would rather talk to people who don't have first hand experience so she can't get any informed feedback or questioning of choices (I am not like this but worried after she quoted a doctor saying something - and I wanted to make sure she wasn't being manipulated onto a path not right for her). And then tons of women just show their tits on instagram all the time as if it's empowering. It makes me wish those women got bc instead of me. I wonder how empowered they'd feel then.
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Blah333, you'd actually wish breast cancer on people just because you want everyone to suffer? Really?
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Last week in my weekly call to my mom, she said SHE has to get a mammogram now at nearly 82 because of MY cancer (she wasn't pleased). People. Can't live with them, can't shoot them.
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Edj3, ouch! She sounds fun 😱. I've tried to get my older sister (73) to get a mammogram. She just starts whining about how much it would huuuurt (I don't think she's ever had one). I told her at her age, they're just deflated sacks anyway and squish easily. Both Mom (at 85) and I (at 68) had breast cancer (plus an aunt), and SHE'S the one whining about mammogram pain to someone who had a medical shark bite? Made me want to stick her head in the mammogram machine!
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I had a really weird experience last Friday. I was walking home from work, and I saw an old friend from childhood, who I haven't seen in 2.5 years, standing on the corner with her daughter. I waved and smiled and started walking towards them. When she saw me, she burst into tears and started babbling and sobbing! I was like what the heck is going on here???
Turns out, a friend of a friend of a friend spread the news about my diagnosis. And it had eventually gotten to this person, who then took it to the extreme. I said, "Wow! Thanks so much for caring!"
So weird!! I have no idea what that is about. I don't talk to this person and we don't hang out. We haven't hung out since we were 13 years old!
Anyway - these things are annoying. And I also try to see them as...endearing??? Or something.
I am sorry your friends have alienated you. That really sucks. I was told from a wise friend/colleague, at the time of my diagnosis, that when one is diagnosed with cancer, to form their "Funky Bunch" of friends. Find people who are comfortable with illness, and comfortable with medicine and doctors (to some extent), and who can recognize that you are still a human being that feels like anyone else on the planet, and happens to have a medical diagnosis.
It is a shame that freaking cancer is so damn taboo still.
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you can’t control others or their reactions so don’t even try. As many have said, most of our friends and family don’t know what to say so say nothing. I found that I had to lead. I controlled the initial messages and subsequent updates this allowed me to manage the message and delivery. And it took time for people to get comfortable and talk about it. Not a worry- i was pretty focused on planning my treatment path. My favorite response was by my running friend Ray. I had delivered the message through email to my running tribe and the next group run was two days later. (Back story, my husband was in the hospital having just had a stem cell transplant.) We were about 5 minutes into the run when Ray looked at me and said “what the fu##?” Totally broke the ice. A few weeks later, on a run, my friend Ginny, an OR nurse, asked if she could select my anesthesiologist and nurse staff once I had my surgery date.
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I never was sick or looked any different but cancer can scare people away or have the reveese effect.
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