'The Health Care Repeal Won't Hurt You' & Other Things You Should Never Say To A Cancer Survivor

When I was 31 years old, I was diagnosed with breast cancer — Stage II Breast Cancer. At 32, I was given a diagnosis of Stage IV Breast Cancer. In the two years since, I’ve learned more than I ever imagined — not just about cancer, but about life, people and human behavior, as well. I've learned that people often have difficulty imagining what it might be like to live with an illness, or why the constant debate over healthcare in the US can be a very personal issue for some of us. I've learned how a lack of awareness and empathy can lead even good people to say things that are hurtful and misguided.

We’ve all been in that situation: you’re talking to someone — maybe an acquaintance, maybe a close friend — and a sensitive topic, like death or a recent breakup, comes up. You just don’t know what to say, so you say whatever seems like the right thing in the moment, and then you kick yourself later. Or perhaps you actually think what you’re saying is comforting, but for the person on the other end, it may be the exact opposite. It's a part of life — but when you have an illness like cancer that takes a toll on your spirit as well as your body, these comments can cause real harm.

There a few kinds of comments you should take pains to avoid, not just around people with cancer, but people with any major chronic illness. These comments don't just result in stress and hurt feelings — they're part of a larger cultural lack of understanding about what it's like to be ill, which has very real repercussions.

1. “Well, you LOOK GREAT!”

This is obviously meant to be a compliment, and in almost ANY other situation, I would love to hear it. It feels nice to hear when, say, you have the post-break-up blues. But when you have Stage IV cancer and have been given six months to live if nothing changes, it lands differently.

It’s not that I don’t want someone to tell me I look nice, or pay me a compliment. It’s just that it’s usually said now as some sort of consolation, as if I should feel better about my diagnosis, or having to undergo chemotherapy and all that entails (hair loss, inability to work, the need for in-home care, making sure I have basic necessities like food, etc), because I “look great.” But I became a size 0 because I got so sick that weight wouldn’t stay on my body, not because my “paleo” diet was effective.

I know it can seem like a silver lining to people looking to comfort me, but when you feel terrible all the time what you really want is to feel better, not just look it. Try to keep in mind that a lot of medical treatments drastically change the way people look as well as they way they feel. This is especially true when dealing with cancers or any disease that involves your hormones, thyroid, or stomach. I’ve gained weight from treatments and lost weight from the same — I can’t always control it and it’s been a point of stress for me.

I've also had people make really inappropriate comments about my looks, like “It’s a good thing you’re pretty so you can pull off that short hair.” These kinds of comments aren't innocent mistakes; their implications — “It’s a good thing, I’m pretty….” or what? I should have made sure I didn’t get cancer? Because if I wasn’t pretty with short hair it would just be TOO MUCH for your precious eyes to take?!? – are pure misogyny.

Some days I could talk your ear off about my cancer, other days I don’t want it mentioned. No one can know when those times will be so listening, instead of talking, can be key here.

What To Say Instead:

Of course, I don't want to hear about how I don't look good, either, so you’re kinda between a rock and a hard place if you want to comment on how a sick person “looks.” Which is why it can be a good idea to skip it entirely. If you would really like to comment on the attractiveness of a person dealing with an illness, may I suggest something along the lines of “Wow, that short hair really showcases your eyes/smile.” A simple “You look beautiful” is also always lovely to hear.

2. "What have you been up to? What do you do for work? Are you dating anyone? "

For people living with an illness, simple “small talk” questions can stimulate a lot of stress and are a constant reminder of how our lives are drastically different from those around us — which can be very complicated to explain to people. After all, these are very simple baseline questions, the kind you would probably ask someone casually without investing much stock in their answers. Easy questions that fill space and give two people something to talk about, right?

Not for the girl battling cancer. Answering these kinds of questions inevitably leads to stress, whether or not the questioner knows that I am sick; I either end up managing someone else’s feelings about my illness or just lying so that the interaction can be over sooner.

I can’t stress enough here that there is nothing wrong with people thinking these are appropriate questions to ask someone dealing with an illness. Rather, they're stressful because someone battling cancer is asked that question constantly, by every single person who knows they’re sick, including the many nurses and doctors they come into contact with. The problem isn't the person asking the question; it's the nature of the question.

What To Say Instead:

Instead of “How are you feeling?” you could try “How are you tolerating your treatments?” or acknowledge it by saying “I hope you’ve been feeling well”, and then let the sick person lead the way. Some days I could talk your ear off about my cancer, other days I don’t want it mentioned. No one can know when those times will be so listening, instead of talking, can be key here.

My favorite conversations nowadays are the ones that are just NORMAL — my best friend calling me to bitch about someone or something in her life, my sister telling me how my nephew won’t stop turning everything into “poopy this or poopy that,” or the ones that are just about someone other than me. There is an element of self involvement that has to happen when you’re ill and working hard just to stay alive. So getting out of my own head is heavenly.

I'm not saying that I expect everyone to be perfect or think extensively about every single thing they say before they say it...What I am hoping is that you'll put yourself in our shoes.

3. “OBAMACARE had a ton of problems, don’t worry, you’ll be fine if they repeal it.”

This one can be controversial, and to be honest I’m not here to get political. But the attempts to repeal the ACA — including the most recent, the Graham-Cassidy bill, which could increase the number of uninsured Americans if implemented — has been a HUGE point of contention for me and most of my “metavivor” (metastic breast cancer survivor) friends. To us, health care isn't a political talking point; it's literally life and death, and many people talking about it simply don't understand.

Imagine that you have gotten very ill — it just happened, and all the sudden your independence, your ability to work, everything was stripped from you, just because you happened to get sick. Before cancer, I never went to the doctor for anything more severe than strep throat, but now, I have a MAJOR pre-existing condition. And people don't always understand what that actually means.

It means that if the ACA is repealed, according to some estimates I've looked at, it would cost me upwards of $100k a year out of pocket in insurance to stay alive. No GoFundMe in the world will cover those costs. When it comes to health care, all I am now is a “pre-existing condition.” And protections for people with pre-existing conditions are one of the things the repeal will destroy.

And I am lucky enough to live in a state that cares about this; not all states do. So what happens to my metavivor friends there? Do they lose their insurance, and then ultimately their lives, because of money and unlucky circumstances? People's comments about health care may not come from a malicious place, but they show a complete lack of understanding about the lives of people living with severe illnesses.

People don't just tell me I'll be fine if the repeal passes; they also make other comments that show that they don't understand how health care works. Like, why don’t I move closer to my family to have them take care of me if the repeal passes? The answer is simple — I can’t. I can’t move out of my state and risk being uninsured for any amount of time. The drugs I need to survive are extremely expensive and without them I will die, fairly quickly.

What To Say Instead:

Please do not, under ANY circumstances, no matter what your political views are, tell a sick person that we “will be fine no matter what happens with health care, don’t worry.” Most of us are already filled with fear from all the unknowns of this disease; we do not need to also be in fear of losing the very thing keeping us alive.

Put yourself in our shoes...what would you want to hear? Would you care about whether you’re pretty with short hair? Or would you just be happy to be here, alive?

Listen, I don’t always say the right thing. No one does. It is inevitable that in this life, we'll eventually put our foot in our mouth and hurt someone's feelings or offend them. And those feelings are just as valid to them as these ones are to me. I'm not saying that I expect everyone to be perfect or think extensively about every single thing they say before they say it. Hey, making small talk is hard!

What I am hoping is that you'll put yourself in our shoes. If you know someone enduring cancer treatments or the daily struggle of a chronic illness, try to think about how you feel on your most exhausted day. You’re tired (possibly extremely hungover), irritable, nauseous, and experiencing flu-like symptoms and body pain. Now, imagine that you feel this way and you can’t see an end to it. It’ll likely come in waves this way for the rest of your life. Then ask yourself, what would you want to hear? Would you care about whether you’re pretty with short hair? Or would you just be happy to be here, alive? The next time you speak to someone struggling with a chronic illness, remember your answer.