I’ve been living with cancer for six years now, having been through three abdominal cancer surgeries, five rounds of chemotherapy as well as countless scans and procedures, I’ve become deeply aware of the “etiquette of cancer.” Or the lack thereof. Etiquette has everything to do with situation, context, timing, individuals and circumstances—cancer etiquette is the same. I can’t offer any concrete rules, only suggestions and advice about how to communicate when the subject you’re dealing with is cancer. Perhaps most importantly you should be authentic and true to your relationship. Essentially the person hasn’t changed and wants to be treated as you always have. He or she is still that special someone in your life, with cancer, for the time being.
Respect the Person With Cancer’s Privacy
One important area of etiquette that was sometimes breached during my diagnosis and treatment was respect for my privacy as a cancer patient. Of course, I won’t name people specifically, but there were one or two family acquaintances who took it upon themselves to spread the news of my illness. Please don’t share cancer information unless you know you have permission from the individual. Don’t use telephone calls, emails, social media, newsletters or bulletins to comment about a person without their specific consent. This rule is especially important when it comes to something as intensely personal as one’s health or a cancer diagnosis.
Practice the “Ring Theory” of Kvetching
Recently a technique has gained attention for coping with a major life crisis, such as a serious illness. It’s called the ring theory of kvetching, so named by the psychologist Susan Silk, writing in the LA Times in 2013. Silk drew on her experiences as a breast cancer patient. When she declined one colleague’s visit, pleading exhaustion, she was told, “This isn’t just about you.” “It’s not?” she wondered. “My breast cancer is not about me? It’s about you?” The main principle of the ring theory is that support, caring, comfort FLOWS IN. Kvetching, venting, complaining, requests for empathy, all of this only FLOWS OUT. The person or people with the illness, trauma, or other enormously challenging life situation — they get to complain outwardly to their first circle of support. The first circle of support does NOT vent — about the challenges, the loss of sleep, the emotional toll, etc. — to the person or people at the centre of the trauma.
Don’t Offer Treatment Advice
When I was undergoing treatment, I can remember getting angry when people other than my cancer care team would try to give me medical information. “If I want information regarding cancer or cancer treatment, I’ll ask for it,” I thought. In the months following my cancer diagnosis I was inundated with information and advice from my medical team. Consequently, the articles from newspapers, magazines or online publications that I received from other people were annoying. For the most part these pieces were irrelevant and unnecessary. Also be careful when presenting teas, potions or homeopathic remedies to treat cancer. When some individuals gave me a gift basket with ginger and dandelion root, I didn’t bother to explain to them that these nutrients are specifically mentioned on a list oncologists give to their patients. Ginger and dandelion root do not combine well with many traditional chemotherapy drugs, and therefore patients should refrain from using them during active treatment.
Don’t Minimize the Diagnosis
Don’t declare, “Oh, cancer’s no big deal. My mom has had that for 20 years and is doing fine.” Remember that I’m not your mom and that any cancer is a serious issue. Even skin cancer, bladder cancer and other “minor” malignancies kill people every day. They cause suffering. They cause organ removal and disfigurement and fear and shame. I hate when people try to deny this fact or to minimize it by giving me false reassurance or by saying that I’m going to fine. The truth is I don’t know I’m going to be fine, you don’t know I’m going to be fine, even my oncologist doesn’t know what my outcome will be. Instead, I feel comforted by phrases like “I believe in you.” or “I’m pulling for you.”
Don’t be Judgmental or Ask for a Health History
For many cancer patients there’s nothing worse than being sick and getting advice from the healthy, because it’s almost like insinuating we did something to make this happen to us. It may be true in some cases that our lifestyle or health care choices increase the odds of getting cancer or contribute to cancer progression. However, if you cause someone with cancer to absorb blame and feel shame it will almost certainly make matters worse. Shame and guilt are unnecessary burdens to carry. From everything that’s known about the emotions and health, acceptance and forgiveness are what cancer patients need to cultivate and enhance healing, not self-condemnation or self-blame.