After a triple (-) breast cancer diagnosis, bilateral mastectomies, sentinel node biopsies, 8 rounds of treatment with 4 different chemotherapy drugs, multiple surgeries to rebuild the bionic boobs, 14 years of survival, and mentoring over 1,000 women have unfortunately (fortunately) made me an expert in cancer etiquette. I do not blame anyone for the loss of words, misplaced words, stares, or silence. I am sure I acted the very same way before experiencing cancer myself, but with an open conversation, we can begin educating ourselves on the most genuine way to talk to people diagnosed with cancer.
First, let’s identify the well meaning stereotypes that cross the survivor’s path:
WiMPs (well meaning people). As they say in the South, God bless their hearts. Let me reenact how the WiMP check-in phone call goes. (RING RING) Good Morning! (BTW..I am actually feeling very positive this morning. I have done my meditation, taken a walk and gotten my cute boys to school!) Cue in the sound... sniffles, sobs, sighs. “I am so devastated by the news. David told me the terrible news last night and I did not get a wink of sleep.” David calls my husband a few days later and says, “I don’t know what to do. I told Jill last night that you had cancer and she hasn’t slept in days. Our household is turned upside down over Janet’s breast cancer!” My favorite from a dear family member right after I shaved my head…”My baby lost her curls. (crying and nose blowing) This is terrible. What are we going to do?” Hard to believe, but these are real life conversations from real life friends whose names have been changed to protect the innocent.
Head Tilters. Head tilters are known for their pitiful eyes, annoying voice, and the angle of their head which is ALWAYS slightly tilted to the right.This is how this conversation goes...it is a brief one, I can tell you for sure. The Head tilter comes in like this. Carrie sees me from across the room at the back to school assembly. She scurries as fast as she can to get the pole position right in front of me and in clear view of the onlookers. The voice is hard to describe...let me try to illustrate. It starts HIGH…”Janet, HI!” Then immediately drops two octaves...”How ARE you?” spoken with the perfect head tilt. Her pity about my situation is obvious. If you have had any trial in your life, PITY is exactly what you DO NOT need. Enough said.
Know-It-Alls. Cancer is complicated and hurling unsolicited advice onto survivors undergoing treatment is very overwhelming. You need to leave this to the professionals unless you have actually been in the arena yourself. The advice and “research” from the Know-It-Alls was never ending...juicing, fasting, high protein, no sugar diet, alkaline diet, jogging, walking, yoga, pilates, meditation, visualization, acupuncture, aromatherapy, hypnosis, music therapy, aloe shots, coffee enemas, shots of vitamin K, animal dewormer, and much much more. While many of these ideas are great, many might not be helpful at all and the survivor needs to figure out the best way with her oncologist to fight the piss-ants that have invaded his/her body.
The Silencer. When you don’t know what to say, don’t say anything at all. The silent treatment is especially painful. It makes you feel like an outcast. All you have to do is say, “Hey, I’ve been thinking about you.” The end.
The Looky Lou’s. Looky lou’s are known for their special feature, their airplane eyes.
At the start of the conversations, their eyes go from your eyes and make an emergency landing on your chest, and back up to your head. Sometimes, they have to make several emergency landings to get all the information that they need. Yep, I’m flat. Yep, this is a wig. Yep...yep...yep.
I know you are now thinking, “How in the world am I supposed to navigate a conversation with someone in pain. I just know I will mess this up.” Or, “I am in pain, too. It is devastating to watch my loved ones suffer.” You are in pain, your well meaning advice is sympathetic and well intentioned as it stems from your love for another. After reading several articles trying to crack this nut of communication, I ran across an article in Psychology Today, September 26, 2018, written by Debra L. Davis, PhD called “How To Respond To People In Crisis: Comfort In, Dump Out.” I am going to paraphrase the theory this article lays out, but will attach the original copy in a link below.
Susan Silk, a clinical psychologist, had experienced a life-threatening illness and was on the receiving end of a typical WiMP who happened to be a colleague of hers. The colleague complained that her illness was hard on her too. Finding the spotlight focusing on another’s need when hers was greater was painful and disillusioning, but a good outcome occurred. Davis writes, “After Susan Silk’s disheartening experience, she was inspired to create Ring Theory, a model of caring that clearly, concretely delineates appropriate versus inappropriate interactions with everyone around you during times of crisis or tragedy. Whether hard times have fallen on you or someone else, the basic idea is “comfort in; dump out.”’
In the Ring Theory, you draw a circle on a piece of paper. In that circle, you write the name or names of the people who are experiencing the trauma. Next, draw a concentric circle around the original circle. The names of those most closely connected to the inner circle are placed here, i.e. mom, dad, children. Now, another concentric circle with the names of the next in line, i.e. aunts, uncles, best friend. Then, another concentric circle with the names of the next closest, i.e. church friends, school friends.You keep drawing concentric circles until you have identified your personal community. Each person in this community is going to feel pain and fear and the need to express these emotions. The key is to whom they can emote. If you find yourself in the unfortunate position to be in the bullseye, I am sorry. However, you can bitch, cry, moan, and ask for help from any other circle outside your own. If you are in the next circle, you can bitch, cry, moan and ask for help from any circle outside your own, but are not to do so to the inner circle. Only comfort and support is allowed to the inner circle. Comfort IN...Dump OUT. This theory applies to all circles in your target. Comfort IN...DUMP OUT.
When I analyzed a few of the painful well-meaning comments that were hurled my way, I knew the Ring Theory would have eliminated most of the inadvertent pain. My mother was devastated to see her daughter’s curls gone. She was scared for me, she would have done anything to have cancer instead of me, she was my greatest support. Had she simply expressed her emotions to my aunt or my brother, I would have felt empowered vs. deflated. I hope this is helpful in navigating the minefield of crisis communication. Taking your time to find where you fit into someone’s target is a great step in finding positive outcomes for the person in pain. And for goodness sake, keep the head tilting to a minimum!