When I received my cancer diagnosis, I felt I’d been hauled into a horror movie in which I was playing a key role, but hadn’t been given the script. I felt lost, mortal, frightened. The people and landmarks around me looked the same, but no one could understand me.
People I had known all my life started to disappear. Those who stayed began to treat me differently. Their love was still there, but fear crept in between us. No matter how hard they tried to hide their fear, it lurked into their behavior. It showed on their face. It showed in the words they used. It showed in the distance they maintained. It showed in their need to fill every second of silence.
At the societal level, I discovered that my status had also changed. I now belonged to a downcast group. The group of the sick, the pitied, the downfallen, the avoided. The people we write off because they are too sick. The people we fire because they have cancer. The people we avoid because they make us feel uncomfortable.
But what troubled me most wasn’t being alone or avoided. Not everyone deserted me. I still had friends who stuck by my side. I could call on them when I needed company. What troubled me was a permeating feeling of loneliness that never went away.
It was different than the loneliness I had experienced before. It was more subtle. Yet more pervasive. I couldn’t get rid of it by calling a friend. It followed me around like a never departing shadow. Even when I spoke to my family.
It is not until I shared my experience with other cancer patients that I learned it was a shared experience for cancer patients. Still, it took me a long time to put my arms around it. If I was not alone, then what was this feeling???
The best way I can describe it was emotional isolation. The isolation that resulted from not being able to share my experience at a highly painful time in my life. I was longing for my suffering to be heard and recognized. But people could not do that. Every time I tried to share my pain, I was met with silence or judgmental advice. “You need to be positive if you want to beat cancer,” they said.
My life was filled with suffering. Yet, no one wanted to hear about it. “Tell me happy news,” they said. Or “What else is going on besides cancer?” Positive stories were the only thing people were willing to hear. Everybody knew I had a life-threatening illness. Yet, they preferred to live under the deception that I wasn’t that sick. “Get better soon,” they said as if I had a bad cold.
People’s inability to make room for the reality of my cancer experience made me feel invalidated. I felt like my true self had no seat at the table anymore. The only part of me people wanted to see was the cancer warrior who smiled on photos and filled them with hope. That was such a small part of my experience.
I discovered that our society has no healthy way of integrating cancer patients and people living with serious illnesses. At the beginning of my cancer journey, I mistook people’s behavior for a lack of empathy. But later, I realized I was wrong. It was not that they were not empathetic; they were uncomfortable. Minimizing my condition was a way for them to manage their fears.
Speaking to a cancer patient is hard because, as a society, we are not good at being present with what we cannot fix. Our education prepares us to become fixers. Our culture rewards fixers. So when we come face-to-face with suffering we cannot fix, we are at loss. We continue to bestow fixing advice and platitudes because that’s all we know how to do.
At a time when I most needed to be heard, I felt constantly invalidated. It made my cancer journey much harder to bear. Now, as a cancer haver, I am careful to pause and acknowledge the suffering of others. I go by the principle that if people are brave enough to share their vulnerability, it is because they need to be heard, not lectured.
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