A question for the NSCLC Community

Thinking about how other people talk about your or your loved one’s condition, what are some words or perceptions that make you cringe? What do you wish people wouldn’t say?

Answers from the Community

People are clueless that I am still dealing with this, other than my close friends and they’re supportive. There isn’t much that makes me cringe, per se.

I didn’t do this to myself. Lung cancer, anyone can get it whether they’re a smoker or not. And if they were a smoker, it’s still not their fault. They didn’t… It’s considered a stigma cancer, and that’s known in most lung organizational world. And it’s just a sad thing that this is why it’s cancer that they tend to not care about and say that I did it to myself, unlike the better cancers.

Yeah, I wish they would not say it happens very often. If a friend introduces me to somebody, they’ll say, “[PII redacted] is so incredible. She beat terminal lung cancer.” And I hate that. I did not beat it. I’m in the fight right now, I will be for the rest of my life. Even though I’m open and honest about my terminal diagnosis, that has no cure, that I’ll be in treatment for the rest of my life, people see me posting pictures of walking the dog and walking in a 5K or doing my DDP Yoga and they’re assuming that I’m cured and it’s over. And this is never, ever going to be over. It’s also frustrating when you’re having a horrible side effect day and you’re just feeling, inside just feeling horrible and somebody will just be like, “Oh, you look so good.” And there were times that I would respond with, “Well, you should see the inside of my body. It’s trying to kill me.” So even though, I’m in therapy and chemotherapy, IV chemo, and I’m not losing my hair and I don’t look frail and I feel physically well some days well enough to exercise and I’m so excited that I get to do those things that I post it and share it. And people are getting the misconception because I don’t look sick. That happened at work, I was discriminated against work because I was on a treatment that caused major, major muscle, bone, joint pain, and I was moving slower. And so I had asked for auxiliary help to finish my mail routes and the supervisor had said to the union representative that, “Why is [PII redacted] asking for help? She’s smiling and laughing and at work every day, she doesn’t need help.” And so it was just, there’s not any like empathy. And sometimes other people with other types of cancers, they still don’t understand what it’s like to be in my shoes.

Well, it’s almost as if they have you buried already. They’ll say, “Oh, I’m so sorry to hear that.” I mean, I know they mean well in saying that, but they don’t say after it, “Well, hang in there. It’ll get better.” Or just encouragement. Just, “I’m so sorry to hear that.” As if I’m already dead and buried. Or, “Oh, you should go to another doctor. Do this and do that.” Or, “You should try holistic measures.” Just silly things. They don’t mean … I think it makes people uncomfortable and they don’t know what to say, but I don’t mind people saying, “Oh, I’m sorry to hear that.” Sometimes they just say that and nothing after it. But I think, for the most part, people try and understand. And so that’s the way you have to look at it. That’s all.

When I was first diagnosed everyone asked me if I smoked, which I don’t. Someone told my daughter about a book they had just read about death and dying and how it could be a beautiful process. People like to tell you about people they knew who died of cancer or what hell they went through with the different treatments, including chemotherapy. And all of that is not helpful. I feel like someone should just say, “I’m sorry you’re going through this, and what can I do to help?”

Well, I know people are intending to be helpful or sympathetic sometimes, but they may not realize that some of what they’re saying can they discouraging. Like, “Oh, tell me he isn’t losing more weight,” or, “I hope he’s not having any pain,” things like this that are really not that helpful and tend to bring up negative thoughts about treatment other than just dealing with the day to day experiences of doing the best you can with living day to day.

I wish people wouldn’t automatically assume lung cancer is from smoking. I can understand because most people think that. I cringe when people assume that because my type of cancer is a mutation and it’s not known for smokers and it has nothing to do with smoking. It bothers me because I feel nobody deserves it, whether they smoked or not. People give a lot more support to other cancers, even if those cancers were caused by lifestyles or whatever. I do feel that everybody deserves compassion. Another thing that makes me cringe, although intentions are in the right place, is when somebody will say, “Oh, you don’t look sick. Oh, you’ll be all right.” Oh, and my other pet peeve that makes me cringe is when somebody says, “Oh, just pray and you’ll be healed.” So, those are my pet peeves and those are the things that make me cringe.

Words of perception. The only thing I can think of is the word terminal. I think it’s something that maybe they don’t even use it very much anymore but certainly other people used to use it a lot. I don’t know if doctors do but certainly other people used to. What do I wish people wouldn’t say? I guess I wish people wouldn’t call me offensively to they ask how I’m feeling and then go right on to tell me how they’re feeling and what their problems are. I often find myself wanting to say your problem is pretty small compared to what I’m currently going through. Then, again, I don’t know. I can’t put myself in their shoes so I can’t really say.

I think the biggest one with lung cancer is when people ask how long I smoked when I smoked because I have never smoked.

Well, the biggest thing is I have non-small cell lung cancer and I never smoked a day in my life. So, the perception about lung cancer is that you were a smoker and you created this for yourself, which doesn’t have to be the case for all of us that have non-small cell lung cancer. So, that’s a little disturbing and I would say people sharing that, “Oh, I knew someone with lung cancer and they passed away…”

I would say that the question that I get asked that really bothers me is whether or not I smoked. I was diagnosed with lung cancer, even though I was not a smoker. And I think there’s just an assumption that people with lung cancer smoked and are somehow to blame for their disease. Which no, it’s a terrible, terrible stigma that surrounds lung cancer. Anyone with lungs can get lung cancer. I am an example of that. And I’ve met many other people who had no smoking history and no other risk factors, but they still got lung cancer. No one deserves it, no matter what their smoking history is. So that particularly makes me upset when people ask that, of course, people who know me know the answer, but sometimes they still ask or they just can’t believe that I somehow got lung cancer. The other thing is when someone says just kind of insensitive things, like I had someone say to me once, “Oh, we’re all going to die anyway.” Which is very easy for someone to say when they don’t have to think about it as frequently as I do. So just those types of insensitive remarks. And I know people mean well, but it’s just… And I know they just probably even regret it after saying it because they weren’t thinking. But those are just a few examples of things that irritate me.

I really wish people would not ask me if I was a smoker, as soon as they learn I have lung cancer. One person actually said to me that I volunteered to get my lung cancer by smoking. Another lung cancer survivor, one who never smoked, said that people like me give people like her a bad name. I was really shocked when I heard somebody say that to me.

The one I hate the most is, “Whoa, you, you look good. You looking good.” It’s like what do you expect me to look like? Death? Gray complexion, my hair gone, teeth falling out? What are you expecting to see? “Oh, you look good.” I don’t ever remember people ever saying that to me before I had cancer. People might say, “Oh, you look nice today,” if you’re dressed up or your hair is done differently or a haircut or you’re going out for the evening. But I just, I don’t know what they expect. I’m supposed to be looking like there’s some preconceived, “This is what you’re supposed to look like when you have cancer?” Well, I am the face of cancer and darn it, I look good. And I look healthy because I’m taking care of myself. That’s enough, I guess, about a response.

One of the things that I hear most often that I just really hate hearing, is somebody knows I have lung cancer, their first thing out of their mouth is, “I didn’t know you smoked.” Or, “Oh, how long did you smoke?” So, that’s hurtful. All you got to have is a pair of lungs to get lung cancer. So, that’s what I dislike the most.

One of the things I hate most is sympathy. I hate when someone says, “I feel sorry for you.” They should actually feel great for me because I survived a cancer that I shouldn’t have survived. I also am not sure big fan of somebody immediately asking me if I smoked, as if getting lung cancer was my fault because I did smoke. I quit three years before I was diagnosed and it’s kind of a rude question to ask somebody with lung cancer. You don’t ask somebody with breast cancer if they got implants or… I don’t even know what to compare it to. I think there’s a big stigma attached to lung cancer and it can be really annoying.