I don’t think any of us really expects people to offer us perfect words of wisdom or comfort when they find out about our diagnoses, but I am surprised by how many people have impulsively said really inappropriate and completely uncomforting things.
How do some people become so insensitive that they feel free to casually and graphically talk about cancer deaths — even to someone they don’t know well enough?
You know, I am getting tired of excusing certain behavior with the “people don’t know what to say” phrase. There has to be a line people can’t cross and they need to be aware of it. But whose job is it to educate the non-cancer people about these things? A patient going through treatments is too tired to do it.
Well, recently it happened to me again — and I responded exactly the way I wanted to. I was telling a co-worker (a temp, who was on her last day at the job) about my diagnosis and she didn’t even let me finish my sentence when she started giving me details about her friend’s painful death with cancer. I could not help myself. I leaned over her desk, looked into her eyes, and said “you know, you will die one day too.” I know my approach was not the best, and probably a little inappropriate, but I guess the annoyance caught up with me.
I reminded her that everyone will face mortality, but we don’t like to be reminded of it, do we? And of all people, we cancer patients certainly don’t NEED to be reminded of it. Anyway, that was the last I saw of my co-worker.
I’ve read a lot of articles on “what not to say to cancer patients.” I think we’ve all been victims of situations like the one I described above. Often I haven’t responded the way I wished I could have. I get upset with myself for that. But maybe there is no right way to respond.
During my treatments, I didn’t want to use my energy to educate these people while I was dealing with a serious health issue. And, personally, I was afraid to lose the support.
So, when inappropriate things were said to me, I would tell myself “their intentions were good” because I really wanted to believe that.
We all know that many people have a hard time with self-awareness, and most people don’t know what to say or how to act around you when you give them your news. But it gets frustrating sometimes – to the point that we feel alone. So wouldn’t it be better to correct/educate them so they don’t say something wrong to another cancer patient?
I think that just as much as we patients get educated about how to treat our disease, and how to cope with it, there should also be some level of education on how to approach a patient. But whose job is it to educate? Should we incorporate a new curriculum at home to teach our children about empathy and how to behave when others are facing a challenging situation such as cancer? We should already be doing that though.
Should hospitals incorporate new strategies on how to care/approach/communicate to a cancer patient? Or is this responsibility another part of the patient’s burden? After all, we patients are probably best qualified to lead a real discussion and create a better interaction between the patient and the non-cancer people.
I think this communication problem is one of the reasons why patients isolate themselves and don’t feel they receive the right support from non-cancer people (not saying all act in that way). This is why I didn’t tell everyone about my diagnosis in the beginning. I just wish we didn’t have to excuse other people’s behaviors anymore. I also wish they wouldn’t take things personally when we try to educate them.
By the way, it feels just as bad when it’s a family member facing cancer, and someone responds in the same way.
This is exactly the type of situation where you should ask yourself the question: “How would I feel if someone said that to me?” before saying anything.
I am curious to know what other patients think. What’s more important to you: to ignore or to educate? How do you react to people’s ignorant comments about your cancer? Do you use the energy to address it at the time those comments are said, or simply ignore them altogether and move on to the next interaction?
The small c 
This is a great post, Rebecca and an important topic that needs to be discussed. To answer your questions, I always think it is best to educate someone and if that person gets offended in the process, well…that’s more their problem than mine. Because, honestly, I don’t have a lot of time at the moment to educate people so doing so is a gift, in my opinion. To answer your point on patient care by nurses and doctors…that is a discussion that has been happening with patients for a long time. There are programs where actors come in and pretend to be patients to help train doctors to be more empathic. Not all doctors get this training and not all respond well. I’m lucky in that my doctors and nurses at NYU are amazing. My only negative experience has been with the doctor at Roosevelt who diagnosed me and his staff. They all need some major training.
When someone starts to tell me about someone who has died from cancer, I try to offer my sympathies but I’m also very clear about not wanting to hear that sort of story. I try, in the most respectful way possible to say that those stories are not helpful to me at the moment and prefer to hear stories about survival. I don’t think I’ve offended anyone by doing this. Quite the opposite, in fact. Because, in a weird way, I think people are trying to relate and bond. It’s like when you are pregnant and everyone tells you their horrible birth experience!!!!!! They are trying to relate and help but they don’t realize that they are not helping but generating more fear and anxiety.
Anyway, thank you for writing about this.
Carrie, thank you for sharing your perspectives about this topic that affects all cancer patients. Also, thank you for educating people which I know can be hard when you don’t feel at your best.
Thankfully, my hospital carries a good culture that takes into consideration all aspects of dealing with cancer. But you are so right, even the medical staff can fail. It is important to know how to respond to those comments and doing it in a respectful way, like you suggested, is best. (I ran out of patience and probably took it out on this person at my job.)
One thing to keep in mind is what you said, “…if that person gets offended in the process, well…that’s more their problem than mine.”
I am so happy you have a wonderful medical team at NYU and that they are showing some interest about these interactions. Everyone should care.
Rebecca, I’ve had a couple of insensitive remarks made and have stopped telling people I have/had cancer. You are right that this isolates me a bit, that’s just the way things go.
Based on my awful treatment by the cancer clinic I’m going to write them a system’s assessment and then drop them out of my life. Have already stopped seeing my doctor since every time I need her she’s away. Same with my cardiologist and the local hospital. These people occasionally call me for follow-up exams so I’ll participate that way. The only doctors I trust are my cancer surgeon and a diagnostician she works with, the rest can stuff it.
I have a final exam with the oncologist who replaced the one who dumped me instantly when I turned up desperately sick from my first treatment. From there I’ve been cut-off from all support but the chemo infusions so there not much to report anyway.
Will be contacting the psychological services people to recommend the cancer bloggers “course.” They are hard to reach, located in a different building than the main clinic and have no outreach available to out of town people like me but they might help distribute the information.
My experience was a disaster that others seemed to have missed and nothing other people could say would ever be as hurtful as what I got from my “caregivers”.
That said it’s a shame to have to put up with insensitive remarks and I don’t know what to do about it beyond cutting those people out of my life and helping those that deserve it.
Scott, I feel bad that your medical team has failed you. The one group of people you depend on to “save” you. Many people go into their profession for the wrong reasons. The one main ingredient to becoming a Dr. is empathy, you would think, and some of them lack it. Isn’t this part of their “oath”? I am sorry this happened to you. Please know you are not alone.
I have removed some people from my life (for additional reasons). Something I should have done years ago. Sadly, this may be the best way to go. If the person isn’t “worth it” to you, your inner peace should be a priority, while remembering to forgive (not for them but for yourself).
I had a thought recently which I will post about soon. I spent the last few years thinking “I will never be who I was. I miss who I was.” (Before cancer.) But the reality is, the person I am today is the person I should have been all along.
I’ve changed too Rebecca. Some of it has to do with moving and having no status in the new place. Build a life one place and forget that much of who you are is based on relationships and others’ knowledge of you. Move and this disappears. The change has not been a happy one. This is a conservative place full of false friendliness and genuine meanness and that doesn’t help either. I don’t like this place or many of the people.
In some ways it’s disappointing that I need to choose to be more selective in who to trust but I’ve been through some long and miserable times because people were sloppy with my feelings and my health and they can just piss-off. Asking for help and being shut down or being told I’m “abusive” and will be removed from the clinic when I was in an extreme panic has drive me completely away from the medical system here. I don’t want any more people in the position to abandon me when I need them so I withdraw from their “care”.
Being a social person, all this isolation is unnatural so part of it has shifted online to volunteering and distance courses. Still…I remember having friends that I could forgive for being inconsistent or sometimes being mean. Was I more tolerant then? Don’t think so. Not only did their friendship matter more than their unpredictable behaviours, it seemed like the “cost” of trust was acceptance of small failures (they seemed enormous in the first moments but faded quickly). Now, the failures of strangers indicate to my impatient mind that they are basically shitty people who I won’t know for long, and have no desire to build a relationship with.
Extreme conditions in our life don’t necessarily make us more forgiving or tolerant. If my sense of self is messed with by people, my survival means I dump them.
This is a song for Glenny and giving ourselves to others that makes us vulnerable. We invest a lot in love and can’t be giving it to everyone—we’re past that.
AYO – Only you
Scott
As we get older we have less tolerance for situations, and at the end, we choose to walk away from them. It is safer and less overwhelming. You do the best you can, Scott. If you need to find a new medical team to take better care of you, do it. There are good Doctors out there. Always remember to take one day at a time and try not to lose faith/hope. I know it’s hard.
Thank you for the song. I am familiar with it through you.(My sweet cousin Glenny is gone. Can’t believe it.)
Hi Rebecca,
Interesting question. For me, it depends on the person making the insensitive remark and the situation. And my mood. Some days I’m far more patient than other days. I do think most people mean well, but… I also think it’s our job to educate, but only when we’re feeling up to it. Who else is so invested, right? Great post. Thank you.
Nancy, I agree it is up to the patient to educate because probably no one else will do it, until they are faced with cancer.
Thank you for sharing your thoughts.
Great post and topic. It does suck the responsibility falls to patients — but who else is as capable? It seems odd that society has not evolved on this point, that the same old tired cliches are in use. So many other changes happen in language–changes in slang, or the way technology has altered communication–and all quite rapidly. But when it comes to illness and death, no progression!
You are spot on when you said that when it comes to illness and death, there hasn’t been any progression. But cancer is such a taboo that people refuse to deal with it, at all levels, until it’s absolutely necessary. These behaviors have now turned into some sort of a “culture,” therefore it’s hard to change.
Thank you for your great comment.
Interesting idea about responses to cancer becoming a ‘culture’. My former caregivers have developed a culture too and that’s useful for me to think about when dealing with them. Should we wait for people to change? I think we should push back. People won’t change by themselves.
Very thoughtful post. For me, it really depends on the person, the situation and how I’m feeling that day. If I’m in a giving mood, I’ll try to educate them and let them know how insensitive their comments are. But most days, I’ll disconnect walk and away as I don’t want to absorb any of the negativity.
Claudia, it looks like, in most cases, walking away is the best approach to be able to have peace during treatment (at least temporarily). I find these comments haunt me after a while though. It’s not so much about me, but I think of others, such as family members. I wouldn’t want them to feel the way I did.
We can’t control what others do but we have control over what we do.
Thank you for contributing to this post.
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Hi Rebecca… I try to educate, but that only works when I have the energy or when the statements are somewhat easier to deal with. When someone says that I can beat this, I try to explain respectfully that I won’t, and why. However, when someone came into my home a long while back, wanting to brighten my day, and sat down to fill me in on all the people in her life that have died from cancer, and how I should live, and how I should die, I had no words. I was gobsmacked. Should I have tried to educate her? Truthfully, she wouldn’t have understood, that became apparent after another incident where I did fill her in which did not go over well. I now spend my spare energies on a wider form of education with respect to metastatic breast cancer. There’s only so much energy, right?
Carolyn, I am sorry someone actually had a “picnic” with you about cancer deaths, at your home. I think calling it a “picnic” is appropriate because to them it’s so casual and almost entertaining. I’m also sorry that she tried to tell you how to live your life (and how to die?). That reminds me of a family member of mine who planned my “end of life activities” by reaching out to people I no longer spoke to (like my ex) so we could “forgive” each other (I was stage 2). Although I told her not to say anything about my diagnosis just yet (Sigh). I still love her.
The other issue is how these people take it after you try to educate them about their unacceptable comments. I mean, if they really want to help, I think “listening” is a great start.
I’ve also read things about “what to say” to a cancer patient, and I have to say that saying nothing, just listening, may be the best approach, especially when you don’t know what to say. We live in a society today where people feel they always have to say something…they need to have an opinion about everything. In this case, it isn’t really necessary.
Thank you for spreading the word about MBC. It is helping all of us.
Thank you for your comment, too.
P.S. And you’re right about investing our energy wisely.
It really depends on the situation. I do both. Some I ignore, other times I educate. When people tell me about people dying I usually try to ignore. I never know why people seem to think that telling you they know someone who died of the disease is a good way to connect on that topic. *sigh*
Mandi, that’s a good word you used, “to connect.” It def. isn’t an effective way to do so when talking about cancer deaths.
Thank you for your comment.
Hi nicce reading your post