After going public with my cancer diagnosis, I was met with an onslaught of “grief tourists” who may not have been interested in the harsh realities of cancer.
As soon as I went public with my cancer diagnosis on Facebook in 2018, I was met with a flood of text messages, Facebook comments and phone calls.
People I had not heard from in years were suddenly in my inbox offering condolences and asking questions. Word of my cancer diagnosis spread like the latest TikTok dance trend. To say I was overwhelmed would be an understatement.
I did my best to respond to each and every person who wrote to me because I did not want anyone to feel like I wasn’t grateful for their support. I answered every painful question that popped up in my text messages. These questions ranged from what my life expectancy would be to when my hair would begin falling out. I felt compelled to share these intimate details with the world because I thought that’s what my role was.
People were offering their support, so I should offer information in exchange. The reality was I did not owe them anything, though I felt I did.
Soon a Facebook group was made to keep interested parties updated on my cancer. Facebook groups, CaringBridge pages and more have become a way for patients to cope with this onslaught of attention.
However, in my own experience, this group became like a group of reporters always seeking out the latest scoop. Even worse, I felt like these reporters didn’t want the true story. They wanted me to turn cancer into a fairy tale that they could more easily digest. They didn’t want to hear about me puking after chemo. They wanted to hear how I was “staying positive.” They didn’t want to see me breaking down over my own mortality. They wanted to see me in a wig, smiling despite it all.
The strange juxtaposition of utter pain, destruction and sadness in my private life and the brave, strong and positive patient in public was stifling. I didn’t want to hear how I was an inspiration simply for trying not to die. I didn’t want to hear how brave I was. I didn’t want to hear how upset my own cancer made Sally from fifth grade (who hadn’t spoken to me since).
I have come to understand that these people were “grief tourists,” those who do not really care but are there with buckets of popcorn watching the show. Some are there because they want to feel better about their own lives. Some are there because they want to feel connected to something “big.” Some are there because they want to portray a certain image. No true grief tourist is there for the person in the middle of the tragedy.
If you were in the middle of an ocean, a grief tourist would ride by on a boat and snap a picture. A true friend would drag you out of the water and save you. I really wish I understood that my job was not to perform for grief tourists. It was to survive.
When I speak to newly diagnosed patients, I tell them to be selfish. Yes. Selfish. If you cannot be selfish while you’re fighting for your life, when can you? Don’t reply to every single person. They don’t deserve access to you just because they ask. You are in control. You decide. Focus on the people and things that matter. Focus on surviving. Focus on you!
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