I’m not habitually a complainer. My main focus for most of my life has been to be a planner, a caregiver, a problem solver. I was the person that others asked for help with legal issues in my professional life and that definitely affected my personal life as well.
Sure, there were always stressors and I had my coping mechanisms that usually included at least one venting session to certain people and then I was usually done. When I was pregnant and breastfeeding, there were certainly physical, mental and emotional struggles. And yet those are acceptable, even expected. I also didn’t talk much to anyone who wasn’t pregnant or breastfeeding about them.
And then I was diagnosed with stage iv metastatic breast cancer.
Overnight, people would say the weirdest things, react on a wide spectrum from ghosting to wildly inappropriate loud grief as if I was already dead, and I was/am not objective about any of it. Each of the statements made, regardless of how well meaning, just broke my heart into a tiny little pieces. You see, I was already struggling with the things that the person in front of me thought about or said at a much deeper and more visceral level. Comments, no matter how well meaning were just like fingernails on a chalkboard, walking on glass, and swallowing caster oil all at once.
There are all kinds of good lists about what not to say to people who have cancer but what about the things that might actually sound ok, but make the person living the nightmare feel dismissed/brushed aside?
Here’s my list of things that have actually been said to me that made me feel dismissed and have cost me relationships:
- ANY sentence that starts with “at least.” I am the QUEEN of silver linings. I can silver lining my way out of a paper bag. But you don’t get to tell me the silver linings of my experience, that’s my job. Also, the statement “at least breast cancer is the easy cancer” will earn you a sweaty sock or maybe something far worse. JUST. DON’T. SAY. IT.
- Making assumptions rather than asking questions. Here’s an example that literally happened while I was typing this — my doctor’s office called to do the symptoms questionnaire before my telemedicine appointment. I’ve been going to this doctor for nearly five (5) years and she prescribes a plethora of medication to deal with my pain. And the first question from the medical assistant is, “you don’t have any pain anywhere, right?” Don’t make assumptions, don’t take short cuts, ask open ended questions. JUST ASK A QUESTION.
- Just think positive/focus on the present/live your best life. Because those of us who are living with MBC or another serious disease that kills our friends all the time, we post about dark and negative stuff. We, at times, are in the valley of the rollercoaster of emotions this diagnosis brings. When we talk about that valley, don’t tell us to think differently about it, just listen. We try to focus on what is good, we really do focus on doing what we can while we can, but if you aren’t in this community, ASK A QUESTION, respond with empathy, DON’T INSTRUCT.
- If someone with a serious illness begins to answer a “how are you” question with actual details, realize you are being given a priceless gift. So many people have tuned out, rolled their eyes, changed the subject, looked away when I’ve attempted to actually answer the question. Realize that if you don’t handle this gift well, it will likely go away. We learn pretty quickly who is safe and who isn’t, who actually wants to know and who could really care less. Sometimes these details just come out sideways when a lot is going on, but those intimate shares are more valuable that you will ever know. And once they are gone, they will never be there again and you have lost out.
- You are so strong/You are an inspiration/You’ve got this … or a hundred different permutations. I try to assume that the person saying these things means well and is trying to be a cheerleader; at the same time, these pithy comments aren’t helpful and discount the actual experience. The speaker is most likely thinking that they couldn’t handle what we deal with. And maybe that’s right, but literally no one knows how they will respond to a serious illness until it happens, until you have to handle it. And we literally have no choice.
- My grandma/uncle/friend/dog/relative/random internet stranger died of that or had a bad time with that or was cured by … NO, STOP. You can’t know all the details of a person’s cancer experience and should not act like you could speak to it. Just NO. ASK QUESTIONS.
- “You got confused about that time difference? You need to apologize for wasting my time.” Chemo brain is a thing, compassion fatigue is a thing. We all struggle. Understanding that no one’s time is more valuable that another’s is key; don’t be so arrogant that you think you are any better than anyone else.
- I don’t know what to say/do, so I say/do nothing. I get it, those of us going through something hard are often prickly and you don’t want to say the wrong thing. It’s never a bad idea to tell someone you are thinking of them, that you love them, that you are there for them. You don’t have to fix or speak specifics, just be there. To ignore or to avoid only hurts.
I’m sure there are other things that I could list, but those are the things that are top of mind for me right now. Bottom line? Don’t brush aside the feelings or the experiences of the people around you, especially those of us who are fighting so hard just to stay alive and present.