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.