Preamble
I have made the conscious decision that I would rather be remembered as a bitch whose honest words made other cancer patients cheer “Yes! Preach, cancer brother!” than tell half-truths in order to cater, placate, and people-please to the rest of the world who have no idea how it actually feels to sit in the patient’s chair.
Over the last several months as I have faced my third fight with cancer, I have felt like I’ve been on a one-man, unconquerable crusade to teach the non-cancer world how to interact with us patients. In the spirit of the Progressive commercials about how not to become your parents, this crusade is at times humorous and other times painful in its truth. It is daunting and exhausting, but it is important to me. It is important to me because as a patient I am the one who deals with the mental and emotional fallout when cancer muggles get it wrong. It is important to me because I know it is not kosher in our society for those of us in need of care - mental and physical - to speak out clearly and loudly about our needs and our wishes. The healthy world expects us to take what we are given as it is given to us.
The healthy world can sit on a pineapple.
Dear Social Circles of Cancer Patients,
We need you to read this with care, to take time to reflect on its message and on your own behavior when engaging with cancer patients. I give that warning and request, because the content is likely to make you want to argue or get defensive. Please work past those initial feelings and dive your heart and mind into what I am trying to convey to you.
As cancer patients, it is not our job to eat your soup. It is not our job to accept whatever form of compassion, care, and help you choose to offer. And it is not our job to be the means by which you feel good about yourself.
During my active cancer treatment, someone offered to make soup for me and drop it off at my house. It was a very kind and thoughtful idea. There were just two problems: One, radiation had taken away my sense of taste at the time, so all food disgusted me. Two, even when I am healthy and have a normal sense of taste, I hate soup. When I politely declined their offer, I could tell they were disappointed. In the past, I would have felt immense guilt over their disappointment. But five years of off-and-on cancer life had made me a different person. I knew that saying no was the right thing for everyone involved.
If I had accepted the soup, the other person would have gone through the work and expense and hassle of buying the ingredients, making the soup, and delivering it to my house. All for me to put it in my fridge for several days before I gave up on it and threw it away. Every time I saw it in my fridge I would have been grossed out because all food had that effect on me, and I would have felt guilty that the person went through all the trouble to make their soup for me and I wasn’t going to eat it.
The person’s intention was compassion. But compassion takes two forms, ideally working in tandem. There is compassion to make someone else feel better, and there is compassion to make oneself feel better. If their motive is to make me feel better, then they should want my honesty. If they just want me to accept the help they offer so they can feel good about themselves for having helped a cancer patient, then the offer is more for them than it is for me. And here is where my most recent cancer experience has brought me: Don’t compassion AT me; compassion WITH me.
Compassion is a gift. You wouldn’t buy your friend tickets to the opera if they hate opera, even if doing so would make you feel good. When you give gifts to those you love, you cater those gifts to what you know about the person receiving them - their likes and dislikes. It isn’t about what you want to give them; it’s about what they would want to receive. Please do the same when providing help and comfort to cancer patients. We are still ourselves, we are still who we are as people. Please treat us that way. And if you don’t know us well enough to cater your compassion accordingly, then ask us what we want or need rather than just doing what you want to do.
I would like to borrow a phrase used in the legally- and ethically-regulated world of professional care-giving: “Nothing about me without me.” It would be unethical for a caregiver to force their client to get out of bed at 6 a.m. if the client prefers to stay up late at night and sleep in the next morning. The client has a legal and ethical right to be involved in decisions about their care.
Of course, I am not suggesting that I should have a legal right to sue my relative who tells the rest of the family about my cancer diagnosis. But why does such gossip not trigger an automatic, ethics-driven response from everyone hearing it to the relative sharing it: “Why are you telling me this? If he wanted me to know, he would tell me himself.”
Why do people who know cancer patients think they own that patient’s story or situation? The teacher at your kid’s school who just got diagnosed with breast cancer has an ethical right to decide whether she wants to start a fundraising page or set up a community meal-chain for others to drop off meals at her house. That is not for anyone else to decide, no matter how much they feel it is the compassionate thing to do. The high school senior who just started chemo has an ethical right to decide whether he wants the whole school to make signs and hold a pep rally cheering him on. That is not for others to decide, no matter how much they insist it will make him feel good or, if I may be brutally blunt: no matter how many likes the photos may get on social media.
I know helping others makes people feel good. And do not misunderstand me: people should not stop helping others. But when you help someone, help them in the ways they want to be helped. Compassion, for those who give it, can be addicting. The warm fuzzies you get for organizing a flash mob to cheer on Cancer Timmy outside his house do nothing for Timmy; they only help you. If Cancer Timmy expresses that he would love to see public displays of support to cheer him on, then by all means flash the biggest mob you’ve got. But if he doesn’t, if you’re making assumptions that he will like it, don’t do it. Because for all you know, Timmy has the most obnoxious nosy neighbors in the world who will not stop gossiping and asking him ignorant, demoralizing questions if they find out he has cancer. And your flash mob, yeah…that’s going to let the cat out of the bag.
Consider the patient and their wishes. If you don’t know their wishes, don’t make assumptions. Think. And ask. Think before you spread the news. Ask before you organize a public display of support. Ask before you add their name to your church’s prayer group. Ask before you bring them a lasagna they may not want to eat. If you don’t, not only may you not be helping them, you may be adding stress and difficulty to their already unimaginably stressful and difficult life.
Be compassionate. Be giving and helpful and generous. But if you cannot whittle your compassion to fit the patient’s mental and emotional needs and wishes, then aim your compassion addiction at a pet rescue. Because we refuse to take on the unnecessary stress of being your fix.
It is not our job to eat your soup. It is not our job to make you feel better about yourself. It is our job to survive and live and be ourselves, whatever form that may take. Please help us do that. But help us how we want to be helped.