When I was diagnosed last May, I couldn’t imagine what lay ahead for me. The last eight months may have well been eight years. It’s been a blur of blood tests and bone marrow biopsies, fevers and infections. Any cancer patient can tell you that the disease turns you into an ersatz medical student, whether you like it or not. But navigating the social dynamics of living with cancer — communicating with family and friends about my diagnosis, symptoms, fears and hopes — was a challenge I did not expect.
The oncology world is overdue for an etiquette guide. As a commenter noted below, unless you’re Seth Rogen in 50/50, there’s no script for what to say and how to act around someone with a life-threatening illness. If you can avoid saying these 10 things, you’re off to a good start:
- Don’t ask, “Is there anything I can do?” unless you mean it. If you do, than just do something! When you’re sick, asking for help is tiring and can make you feel guilty or pathetic.
- Don’t ignore someone with cancer because you don’t know what to say. Say something authentic and from the heart (just not anything on this list!). The old joke about voting applies: do it early and often.
- Avoid questions about mortality. “What are your chances?” and “How long do you have?” are major no-no’s.
- Don’t talk about your friend/cousin/uncle who died of the same cancer.
- Don’t use nicknames that refer to the person’s disease. They can come off as offensive, even if they’re meant as a joke. These are names I’ve actually been called: fuzz head, baldy, Suleikemia (really?!).
- Don’t say to someone who’s just lost all of their hair, “You look like [insert: an alien, avatar, Pinky OR The Brain, Gollum].” This is not the time for the Beat-poet game of “first thought, best thought.”
- Don’t put undue pressure on a patient to change doctors or therapies. You may mean well (and you may be right), but be aware that how you offer input can be as important as what you’re offering. What worked for you may not apply to someone else.
- Don’t just repeat phrases like “everything will be OK” if the patient is feeling scared or upset. Instead, just be a good listener and ask questions.
- Don’t tell someone, “Wow, that sucks” upon hearing of their illness. Yes, we know it sucks. Reminders are not necessary.
- If you say or do something awkward, rude or out of line, don’t pretend it never happened. Apologize, and ask for a redo! It’s OK to make mistakes. Cancer patients are used to these kinds of blunders. We’ll understand. Just don’t play the ostrich in the sand.
If you’ve made any of these “mistakes,” welcome to the club. I created this list from my own experience: not to inspire guilt or cast blame, but to unite us all in the realization that for most people to talk about cancer is first to fail, then to fail better the next time.
A version of this post appeared on the front page of the Huffington Post on 1/20/12.