Privilege, Ableism, and Cancer Etiquette

When I finally shared the news that I have cancer, I was touched by the outpouring of love and support from friends, family, coworkers, and even strangers. Their open, generous responses gave me strength. And I have so many heroes: my sister, who really is #1; my friends who write me lovely letters; Jane, who is the sweetest person in the entire world; my parents; my aunt (who is working in a grocery store during this pandemic, by the way, and deserves a LIVING wage)…I could just keep going on.

But people sometimes say or do the wrong things, even though they may have the best of intentions, are just trying to show they care, or believe their heart is in the right place. Instead of helping, people who don’t have any “cancer etiquette” add a layer of exhaustion onto my already-thick fatigue. At best, their missteps are just an annoyance. At worst, they can blow up one of my precious good days. Overall, interactions with these folks make everything harder, for me and for my loved ones.

Every person with cancer is different, and you should respect their preferences and their own unique way of dealing with cancer, but here’s my own personal list of things I wish people would avoid saying and doing:

  1. “You need to get outside more, exercise, be active.”

When I was healthy, or healthier, I used to take a long, daily walk, which I deeply miss. So in addition to being condescending and ableist, this remark also sends a jolt of sorrow through my tired body.

My cancer has dramatically limited what I can physically do, and it’s not just about fatigue. My tumor encases all my major vessels (aorta, pulmonary arteries, superior vena cava, etc.) and puts pressure on my heart and right lung. Inflammation caused by the tumor has made my lungs very sensitive, and my weakened immune system makes them more susceptible to infection. In addition to pleural thickening, I often have a minor to moderate pleural effusion. The tumor has also made me chronically tachychardic. These things often make it hard to breathe, and things like cold, pollen, and smoke make me feel like I’m having an asthma attack, the effects of which can last for days. If I ignore my body’s cues and go outside when I should stay in, if I just “try to push through,” it gets harder and harder to breathe, and I get sicker. Going outside more can actually be dangerous for me, especially during the coronavirus pandemic. I have advanced cancer. Jogging isn’t going to cure it.

If a person with cancer limits their physical activity, it doesn’t necessarily mean they’re lazy or depressed or giving up. It may be that they simply can’t do the things they used to anymore, and that’s rough. They don’t need you trying to guilt trip them over this limitation. They may also be trying to preserve their energy and health, especially to get through treatment or a procedure. If you’ve never had cancer fatigue, you can’t possibly understand what it’s like. People with cancer probably know what’s best for them, and it’s pretty arrogant of you to assume that you know better.

Finally, as a person who has been fat their entire life, I find this remark especially triggering. Simply put, mind your own business. Every person has the right to react to cancer in their own way, whatever their size, whether you deem that reaction appropriate or not. Your approval is not needed, wanted, or welcome.

  1. “You just have to stay positive.”

Just as thoughts and prayers don’t cure gun violence, positivity doesn’t cure cancer.

Toxic positivity–and yes, it’s toxic–says more about you than the person with cancer and does not help AT ALL. In fact, these remarks often do more harm than good, as this article explains.

Here are what some oncologists and people who have weathered cancer have said about “stay positive”:

“I think it does a nasty disservice to patients. A woman with breast cancer already has her plate full, and you want to go and tell her that the reason you’re not getting better is because you’re not thinking positively? Put yourself in that woman’s position and think what it feels like to be told your attitude is to blame for why you’re not getting better. I think it’s nasty…[And] It’s not true. In a spiritual sense, a positive attitude may help you get through chemotherapy and surgery and radiation and what have you. But a positive mental attitude does not cure cancer–any more than a negative mental attitude causes cancer.”–Siddhartha Mukherjee, professor, oncologist and author of The Emperor of All Maladies, in an interview with Decca Aitkenhead for The Guardian

And Anne Boyer, on where “stay positive” and cancer intersect with sexism, from her book The Undying (page 165):

“I come across a headline: ‘Attitude is Everything for Breast Cancer Survivor.’ I look for the headline ‘Attitude is Everything for Ebola Patient’ or ‘Attitude is Everything for Guy with Diabetes’ or ‘Attitude is Everything for Those with Congenital Syphilis’ or ‘Attitude is Everything with Lead Poisoning’…”.

Stay positive is the refrain, as if it were a sin to voice the intense pain and suffering of cancer patients. Why are we so afraid to tell the stories of the majority who die? Why keep promoting the positive anecdote? Why all this mollycoddling? Treating the public like fragile, vulnerable, oversensitive, easily hurt, anxious adolescents needing protection from stressful details is unfair, shortsighted, and in the long run, counterproductive for everyone involved.”–Azra Raza, professor, oncologist and author of The First Cell (page 7)

“The idea that the cancer patient should be made to feel guilty about having had cancer, as if in some way it were all her fault for not having been in the right psychological frame of mind at all time to prevent cancer, is a monstrous distortion of the idea that we can use our psychic strengths to help heal ourselves. This guilt trip…is an extension of the blame-the-victim syndrome. It does nothing to encourage the mobilization of our psychic defenses against the very real forms of death which surround us. It is easier to demand happiness than to clean up the environment…The happiest person in this country cannot help breathing in smoker’s cigarette fumes, auto exhaust, and airborne chemical dust, nor avoid drinking the water, and eating the food.”–Audre Lorde, black woman warrior poet, The Cancer Journals (page 19)

In the film adaptation of My Sister’s Keeper, as Kate faces her approaching death, there’s a couple who give Kate a book on meditation and visualization and tell her that she can overcome her cancer with things like telling her cancer cells to simply go away. A nurse rescues Kate by shooing the couple out of the room. Don’t be that couple. Your inability to accept bad news and hard realities doesn’t help someone who has no other choice. Telling someone to stay positive is like telling a woman to smile. Ick.

  1. “It could be worse.”

Yes, it could always be worse. But dying from cancer at the age of 35 is pretty damn bad.

This remark is dismissive at best and hateful at worst. What it implies to me is that you’re indifferent to my suffering or are jealous of it, which is simply disgusting. If you had to pass through scans and biopsies and surgeries and chemo and the valley of the shadow of death, you would have a lot more humility and respect. Shrug your shoulders in your own space.

  1. Taking things on or over without permission.

One of the most frustrating things about cancer is that I often feel helpless. I didn’t get to pick my disease. I often don’t get to pick my doctors. I can’t afford my healthcare. I can’t stop the cancer institute from taking the house and leaving my sister with nothing when I die. I can’t always control how my body will react to the cancer or the treatment. The last thing I need is for someone to make me feel more helpless, to steal my autonomy, to make me feel like a child.

Recently, extended family started an online fundraiser without my permission. I had already been talking to coworkers about a fundraiser, which we decided to postpone because of the COVID-19 pandemic. I just don’t feel comfortable asking for donations when so many people are in need of help themselves. The family fundraiser web page misgendered me throughout and asked people to pray for me. I’m an atheist. Although I won’t tell anyone not to pray for me, I also don’t want people asking others to pray for me. And the family fundraiser forced upon me the uncomfortable task of asking the creators to take it down and then assure them that I know everyone’s heart was in the right place. This took emotional energy I simply don’t have.

Another person wrote a poem about me receiving my cancer news, told from my point of view. Even now, this sends a cold bolt of fury down my spine. For one, it’s appropriative. The person has no idea what my thoughts or feelings were in that moment, and they have no right to insert whatever they like for poetic effect. Two, it was very triggering. That’s probably one of the worst moments of anyone’s life. And to be thrown back to that moment, especially when I wasn’t expecting it, brought back a wave of feelings, overwhelming me with grief and loss and worry for my loved ones. And then this person acted as if this poem was an act of great generosity. If I want to write about my own experiences, I’ll do so, and I’m very capable of doing so. My story, my experience, doesn’t belong to anyone else.

Please ask for permission. Taking action without it feels invasive and even toxic and it often requires a response, which a person with cancer may not have the energy to give…at least, not politely.

  1. Giving medical advice.

Just don’t. I can guarantee you I know more about my cancer, my body, and my condition than you do.

  1. “I just don’t know how you do it.”

Well, my only other choice is to just lay down and die, so… But I super appreciate you reminding me that I’m going through a terrible, unthinkable, impossible thing. Cool.

  1. Expecting emotional labor from someone with cancer.

Please don’t expect people with cancer to comfort and care for you and help you cope with your own fears about illness and death. They’re coping with enough without having to manage your feelings. If you offer to go with them to an appointment or on an errand or to just hang out, don’t make them babysit you. If you’re a dependent person, it’s probably best not to lean on a person going through cancer.

  1. “If I had cancer, I’d…”

This is not helpful. It’s just not. And it often comes across as passive aggressive, as if you disapprove of a person’s choices but are too much of a coward to tell them. The truth is, you really can’t know what you’d do until you’re thrust into that position. And you really shouldn’t judge people’s choices who are in that position.

  1. “Oh yeah, you think what you’re going through is bad? Check out this thing I’m going through.”

You know Penelope on SNL who’s always trying to one-up people? Don’t be Penelope. My cancer diagnosis is not a competition. There’s no winner-of-the-worst-fate prize. If there is, you can fucking have it. This isn’t a game to me. And my cancer is certainly not about you. Indulge your narcissism elsewhere.

  1. Telling me how I should cope with my cancer.

Dark humor is how I cope. And facts, no matter how frightening. I face things head-on. It helps me love the world in all its complexity. My sense of humor and need for the truth don’t mean I’m bitter or lost in darkness. Ok, some days they do. AND THAT’S OK. But most of the time it’s just me coming to terms with the ugly stuff so that I can focus on the bright spots. I simply can’t tolerate denial. It’s an insult to life, in my opinion. If you can’t handle or disapprove of my coping mechanisms, tough. This isn’t about you.

Lindsay Jean Thomson put together her own list of things not to say, which I recommend. Look, if you’re wondering what you should say and do, just ask yourself, “How would I react if someone said or did this when I’m going through hard times?” Hopefully, that will guide you. And if you mess up, apologize.

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