It’s not about you

I am going to write about a topic that’s just bizarre to me. It has to do with people who make your cancer all about themselves. It’s a tricky topic to talk about because, as someone advised me, I could lose support by opening my mouth or calling people out. (I’ve been getting myself into this type of trouble since catholic school.) But guys, to me, it is more important to educate than to keep the ignorance alive. Don’t you agree? And anyone who would take away their support because of what I am about to share, once again, is making it about themselves.

I know that peoples’ ultimate intentions are usually to help. But understand, when we patients react negatively to a “supportive” comment from someone who has never been diagnosed — such as “if you have to get cancer, breast cancer is the one to get” or “it’s only breasts” — we are not trying to hurt you or be dismissive of your intentions; we are trying to educate you. It would be more supportive to just listen to what we patients have to say because there is a lot you can learn about our experience. And it would help you discover ways you can be truly helpful. For instance, if a patient tells you he/she is scared of dying from the cancer, and your response is “you have to think positive! Your thoughts can turn into reality” and the patient then says there is no scientific evidence that proves that being positive cures cancer, don’t argue with the patient to try to convince him otherwise.

But, back to my point, here are some of the things I’ve been thinking about. I am not going to get too specific here. And for those close to me, if I haven’t addressed these issues with you already, you didn’t do anything wrong. Again, this is not about you. It’s about us, the patients.

First of all, there’s nothing to be envious about when it comes to cancer – trust me!

I always remember a cancer survivor who shared a story in an online group. She said that her sister seemed a little envious that she was getting so much attention because of her cancer. Her sister would say things like “it’s only breast cancer” or “it’s not like you’re handicapped” to her sick sister. And, at one point, the sister went as far as cutting her hair short and getting herself a wig. Patients notice these behaviors but say nothing. They are too tired and overwhelmed with the situation at hand, and yes, most of us let it go and forgive. But the behavior is still weird and unkind.

Another example – and this one is very important – is about people at work. When everyone finds out you’ve been diagnosed, most people want to offer help and support. But sometimes there is that one employee who comments about the number of appointments this patient has to leave work for, and says things like “isn’t she/he done with cancer yet?” Or, “I wish I had it that ‘easy’ where I could come and go whenever I please.” Come on people! Seriously? Do you think I enjoy going to multiple appointments all year, then having to come back to work and stay late to make up the hours I’ve missed – especially when I am feeling stressed out or tired or weak from having my blood drawn? Or having bad nights because I’m worried the cancer might come back? For your information: No, we patients are never done with cancer. And although some patients have fewer appointments than others, there are some who require more attention because each cancer case is different. Be kind and just do your J.O.B. I know I am kicking ass to get my work done.

Please take my word for it — there’s absolutely nothing to be envious about when it comes to cancer. Yes, the love that comes shining through because of the fear people feel of losing someone is touching and comforting. I am not sure how other patients feel about this, but personally, I never wanted this type of attention because of cancer. Of course I welcome it because it has helped me tremendously and I am so grateful, but if I had a choice, I would have rather NOT been diagnosed with cancer. The love could still come even if there were no cancer.

A patient can and will make their own decisions regarding their treatment plan. It’s their cancer.

Have you ever had a conversation with someone about your recommended treatment plan and the person quickly interrupts you to advise you? And then you try to explain that your oncologist has experience with your type of case and knows better, but the person insists that, no, you should consider other opinions and options. And then suddenly it becomes uncomfortable because you don’t know if you should walk away, spend extra energy (that you probably don’t have) educating them, or scream that YOU are the one facing the disease and should be given the opportunity to trust your medical team. It happened to me. I was judged because I didn’t get a mastectomy and instead got a lumpectomy (I wrote about it here). And after I expressed my feelings about being judged, the person did not speak to me for months. I thought her feelings were genuine but she made my cancer experience all about herself. Don’t do that! Patients need your support and one of the best ways to show it is by listening and acknowledging the patient’s real situation.

Only the people who have been diagnosed with cancer are considered “cancer survivors”

Recently, a patient’s family member called herself a cancer survivor in a social media discussion. My patient friend was shocked because she did not know her family member had ever been diagnosed. She was worried because she thought her relative had kept her cancer diagnosis a secret – even if it is a patient’s right to keep his/her privacy. My friend immediately reached out to her relative and requested an explanation. Her relative explained that she had been too close to painful cancer experiences in her family not to feel as if she herself hadn’t lived through it — that she “survived cancer.”

I know that seeing a loved one deal with cancer and its treatments can be life-changing and painful to experience. But, it’s not appropriate for relatives or friends to call themselves cancer survivors unless they’ve been diagnosed and gone through treatment. I am not dismissing the hard work and trauma suffered by those who love and care for a cancer patient. But if you’ve been caring for a cancer patient, you are a CAREGIVER. Caregivers don’t get enough credit for their difficult task. Caregivers have the choice to walk away from the cancer mess we patients are in, but choose to stay anyway, out of love and commitment. We patients have no choice but to stick it out.

A “cancer survivor” – although I dislike using this term to describe myself – is someone who has been diagnosed with the disease, was treated, and luckily lived. The label “cancer survivor” can’t be tossed around. Unless you’ve lived through the diagnosis and disease, you don’t fully understand the complexity of the situation. The patient carries the physical and emotional scars for the rest of their lives. It is a serious thing and the label should never be miss-represented or casually applied.

I’ve said it before and I’ll say it again: If anyone, I repeat, ANYONE, wants my cancer, they can have it. But of course they don’t want all the suffering that comes with it. They seek something else. Maybe to empathize? Maybe other people’s sympathy? And that’s the part that’s troubling to me.

My intention in expressing all this is not to hurt people’s feelings. In fact, that is never the case, but I understand I can’t control how others perceive my message. I get that people’s intentions are often genuine and sincere. My hope is that if these people I refer to read this article, if they ever do, they would not make it about themselves, but instead, think about why it isn’t appropriate or supportive, and in some cases it’s even dangerous, to make other people’s cancers about themselves.

About thesmallc

I'm Rebeca. I was diagnosed with breast cancer at the age of 32. But there's more to my story: I am an animal lover. I love to cook. I have a wonderful fiancé who doesn't mind walking my rocky path with me. We currently live in New York. ---------------------------------------- “Those who have a 'why' to live, can bear with almost any 'how'.” ― Viktor E. Frankl
This entry was posted in Awareness, c World, Coping after cancer, Reflections, Self Awareness, Support and tagged , , , . Bookmark the permalink.

24 Responses to It’s not about you

  1. Iridacea says:

    Sometimes I think generally people are trying to be supportive and to connect, but alas the behaviors you name are tragically way off that mark. Real empathy and support are not skills taught in American culture, and it leaves us with lots of wounding going around. Intent does not equal impact. Some of it is really just another guise for shaming. “You should be grateful you have the good cancer.” etc.
    The outright mean and clueless comments about “having it easy” are another category, wounded people lashing out from whatever hell place they are in, not even an attempt at empathy there. Thank you for speaking to it all. Perhaps it can help people to be more aware of their own behavior, and even encourage those who want to be supportive to find more effective ways to be so.
    xo iris

    • thesmallc says:

      I agree many times people mean well, but I can’t help to wonder what the intentions of some of these people really are. The behaviors I mentioned are very self-centered. I am not sure if empathy is something that every single person can practice, even when they’ve been exposed to those lessons. And this is def. something you experience everywhere. I am not sure these people I refer to would ever have a full understanding of why their behavior is inappropriate, but I remain hopeful. xoxo

  2. lots of emotions and frustration here.. hugs

  3. Yes, and Yes, and YES!
    As I’ve often said, the whole “tell us what we should say” smacks of a self-centered way of acting I will not tolerate any longer (which is why I poo poo those helpful what to say to cancer patients articles now–I’m done with that mess).
    A weird thing happened to me at work while I was in treatment–I was told I wasn’t being grateful enough for others picking up the slack. There was a lot of other psycho-drama going on there, but that was very cruel.
    And it is a little annoying when a caregiver (NOT complaining) takes on the patient’s symptoms. I had a very difficult time with strong fragrance, and still do. I used to LOVE scented candles but since chemo, cannot bear them (makes me sad). My caregiver keeps saying, “yeah me neither–ever since you were sick I stopped liking strong smells too”. Weird.
    Anyway, thanks for the great post! xoxo

    • thesmallc says:

      The articles related to “what to say/not say to patients” don’t bother me as much, but I can see the self-centeredness of them. I am sorry they said that to you at your job; sounds awful and so un-supportive. That’s a good example of “bad intentions”. If there was too much drama, I am glad you’re out of that scene. A patient going through treatment shouldn’t have to deal with this type of BS. Like you, I can’t tolerate strong fragrances. And I remember shutting them off constantly at my mother’s house during treatments. Your story about your caregiver is interesting. I just remembered, there’s a soap I cannot use because it reminds me of my grandmother during her cancer. It makes me really sad and I hate the soap now. It’s not symptom-related for me, but more of an association. Ah! And my guy will forever associate graham crackers with the oncology waiting room at my hospital. It’s funny how each patient has a story to share….or two. xoxo

  4. nancyspoint says:

    Hi Rebeca,
    Interesting topic. With some people, everything is about them. And some like to top your situation, story or whatever it is. A lot of the trite sayings that are meant as encouragement for a cancer patient, are sometimes more about comforting the person saying them. The caregiver taking on the patient’s symptoms is something I hadn’t thought about. Of course, most people do mean well, but still…how much slack you give is up to you. Depends on the situation and your patience level at any given time I guess. Thanks for writing about this. Food for thought indeed.

    • thesmallc says:

      That’s correct, many of the comments said are more about the people saying them than the actual patient. I think the slack you give depends on what type of relationship you have with that person. For instance, an aunt of mine did something that upset me during my treatments. She informed someone of my diagnosis when I had requested that she not share it. However, I know my aunt. I know her intentions were good, even though she did not follow my wishes. She is Christian and in her heart thought it was best for me to seek closure. Yes, sounds like she made my cancer about herself, but because of our healthy relationship I forgave her. xoxo

  5. Becky says:

    The one that always gets me is the expression “but you are OK now?” … not that this cannot be said in a legitimate setting, just that more often then not it is said by someone healthy trying to feel better about my cancer, and not about how I actually am doing.

    • thesmallc says:

      Oh yes, that’s a common reaction people have. For me, it depends at what point during the conversation the comment is said. For instance, if I start talking about my fears, and the person immediately dismisses what I am saying by replying, “but you’re OK now?”, it would def. annoy me because it implies I should just be quiet and be grateful that I am still here (and of course, I am). Now, if the person initiates the conversation with the question, it doesn’t bother me as much. At the end of the day, all we want is a listener. Sometimes nothing needs to be said. Glad we’re not alone. xoxo

  6. This is an important topic. We’ve all experienced so much of this. While I went through chemo, I was a part of an online support group with other patients. One woman was invited to her friend’s barbecue, which was on the Day 3 after chemo, Adriamycin to be exact. Anyone who’s had Adriamycin knows Day 3 is the worst for side effects. She told her friend she couldn’t come because she just had chemo. Her friend responded, “That was two days ago. What does that have to do with today?” and the woman would no longer speak to her for not coming to her barbecue.

    Cancer brings out a lot in those around us. It shows their true colors, some of which are beautiful and others that are not. Co-workers can be supportive, but often there are those who are resentful because they feel they’re picking up the greater work burden. It doesn’t matter to them why. I suppose it’s good to see what people are made of.

    • thesmallc says:

      That’s not right, about that woman and the BBQ. Instead of offering to bring some food over later or/and acknowledging her friend’s discomfort, she decides to stop talking to her and made her friend’s cancer all about her. Sigh. cancer sure brings out a lot in people. And I agree it is best to see those true colors, even if in some cases it’s not what we expected or wanted to see. I have to say though that those closer to me were very supportive. xoxo

  7. Kimberly says:

    Excellent post & an interesting topic for sure! Some people, everything is always ALL about them! And cancer will bring out all kinds of traits in friends & even caregivers….some good, some bad & some downright ugly. Thanks for sharing this. xx

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  9. Beth Gainer says:

    Rebeca, this is one of the most important posts I’ve read. It so resonated with me, all of it, but especially recalling a co-worker who told me that she wished she could get two days off every three weeks like I did for chemotherapy. Lucky me. Never mind that I took all those days off from accumulated vacation days and was sick. She was such a selfish person to make my cancer all about her. I couldn’t believe that comment. For radiation, I had an early morning appointment that would get me to work an hour and a half late, but I stayed late to make up the time. Everyone thought I was lucky to have the privilege of getting to work late. What asshats.

    • thesmallc says:

      Beth, I am sorry about your experience at work. Apparently this one is more common than we think. I remember many patients complaining about the same topic in an online support group.Employers should educate their employees about harassment as this isn’t just related to sexual conduct. I also worked during radiation and scheduled my appts. for 7:30 AM in order to be at work at a decent time, but still, I made it there late. And yes, I too had to make up the time, although my boss at the time was very supportive with my heath (grateful for that). We just have to keep reminding ourselves that we are not alone. And that we need to speak up for ourselves. Hugs to you, my friend. xo

  10. illlive says:

    THANK YOU for this post! Sorry it took me so long to get to reading it. I had a really annoying thing happen when my melanoma metastasized. A relative who I cannot name suddenly became a mega drama queen, weeping and cursing about what had happened EVEN THOUGH I WASN’T REACTING THAT WAY. In her case there are decades of unexamined emotions and such a desperate need for therapy to deal with her issues, but even knowing this, I had to keep my distance. It was NOT COOL, not supportive, and most definitely not helpful.

    • thesmallc says:

      I have to say that family dynamic during a cancer mess is a very interesting area for discussion (the burden of responsibility, the blame, the fear…oh I can go on). Perhaps this is for another post. Our diagnoses affect families differently than the rest of the people and sometimes this creates some tension. Sometimes fear is the ultimate cause for their behaviors. And sometimes the behaviors aren’t supportive, because yes, they are making your cancer about themselves. And other times some people just don’t want to face the reality and create their own fantasies. With all that said, I am sorry you had tension in your family. Keeping your distance is the best approach. This is about you and focusing on your well being and peace of mind. xo

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  12. OMG I totally feel you. I’ve had so many arguments with my christian friends who accuse me of not ‘believing enough’. Apparently I should be saying ‘I’m healed of cancer’ and not ‘I have cancer’. And I’m like, ..”uhmm..I’m still going through the treatments…I still have radio to go through…how exactly is saying something that isn’t factually true supposed to help me right now?” I love the support and the fact that they’re supportive but mehn, as the person who is going through this, I think people should not dictate to patients how to feel or act with the situation.

    • thesmallc says:

      Linda, I hear ya! I often receive the same comments from my christian friends/family members. During treatments, I was careful in choosing who I wanted to interact with for this same reason. I suggest you stay away from certain people during treatments and have one communicate to others about how you’re doing. Survivorship brings another set of issues! And this is when you make drastic decisions about who you would want to be part of your world. It’s more difficult with family, but you’ll find some balance. Have patience with yourself and be kind to yourself. Withing you a quick and smooth recovery. And please stay well!! I look forward to reading your blog (have a lot of catching up to do!) xoxo

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