A native New Yorker, Shira Kallus Zwebner is a communications consultant and writer living with her husband and three children in Jerusalem, Israel. Diagnosed in 2017 with diffuse large B-cell lymphoma, she's fighting her cancer battle and blogging about the journey at hipstermomblog.com
Support for cancer patients and survivors comes in all shapes and sizes, but sometimes the good vibes, encouragement and positivity can go too far
I was an angry cancer patient, a cancer curmudgeon if you will. I spent three weeks during the diagnostic stage in a state of absolute disbelief, then settled comfortably during chemo into a permanent state of rage. I was livid that I had cancer, and the weekly doses of prednisone did nothing to quiet that rage.
My family walked on eggshells around me, afraid that I would snap at a moment's notice. Anything set me off, from having to miss my daughter's first-grade school play to spending a week quarantined in my bedroom when my youngest child had a fever and strep. I was She-Hulk; big, bald and always angry.
During my cancer journey, I blogged about my feelings almost daily. Most of my posts were true reflections of my current state of mind. A mixture of sadness, anger and despair seemed to be my nearly permanent mood. Many of my friends countered my feelings with encouraging words, suggesting that I focus on the positive and my blessings. Sometimes it was helpful to take that hard look in the mirror to see my blessings but often, it was annoying. I didn't want someone to point out how good I had it, I just wanted someone to empathize that I was going through a rough time.
When I got my NED, I slipped from rage into a state of disbelief euphoria. Suddenly, the world was bright once again and the possibilities were endless. That first week without the weight of my PICC line, I showered for hours, wore t-shirts without worry, and planned this incredible comeback to my life. In reality, what waited for me post-treatment was new physical challenges post-chemo include a bout of Bell's Palsy and perimenopause, significant financial debt from reducing my work hours to part-time, and many other roadblocks that cropped up in my path to my new life. I felt like I had been prepared for the cancer battle, but I was significantly unprepared for this post-battle cleanup.
Nearly a year and a half post-treatment, COVID-19 roared into my life while I was still struggling with cancer PTSD. Like so many cancer survivors, I had big dreams for this new life of mine. Aspirations for my career, my family and quality of life; I had barely an opportunity to check off many items on my bucket list before we were all sent into this new life of fear and quarantine.
That familiar cancer rage came back with a vengeance as I watched the dreams of my new life slip away. As someone in the high-risk category, I won't ever be able to let my guard down until there's a vaccine or cure for COVID-19. As my country eased restrictions around me, I still have to shelter in place, maintain social distancing and I wonder if I will ever be able to walk outside again without a mask.
I shared my anger and despair again with my friends, and once again, I was met with a lot of encouragement and positivity, verging on toxic positivity. According to an article in Psychology Today, "the phrase 'toxic positivity' refers to the concept that keeping positive, and keeping positive only, is the right way to live your life. It means only focusing on positive things and rejecting anything that may trigger negative emotions."
What happens when dark feelings are met with toxic positivity is tremendous guilt. At least in my case, when I share the challenges I'm feeling and I'm met with toxic positivity, I feel so much guilt that I just completely shut down. I start internalizing my feelings and begin to worry that all these negative emotions will bring back cancer; instead of turning to my friends for a comforting word or empathy, I turn to my pantry and refrigerator to eat away these feelings. A piece of cake won't ever make me feel guilty about feeling despair about my current situation, but it will lead to other health problems as the pounds start to creep up, which makes food, not the best solution.
For now, I decided to give my friends and family a break from my true emotions. I know they mean well and care for me, but sometimes saying the wrong thing is worse than not saying anything at all. Fortunately, I have a therapist trained in post-cancer PTSD to help me work through these new issues. But if I were ever asked how someone could support a friend either going through treatment or post-treatment, I recommend listening without judgment or just lending a shoulder to cry on. It's more than okay to empathize with your friends and agree that right now, life just sucks, and just leave it at that.