I just got back from Cervivor School West (www.cervivor.org) in San Diego and a key theme for me at this cancer survivorship conference was remembering and sharing how alienating and lonely it can be to have cancer, no matter how many loving people are around you. During a particularly vulnerable moment in a workshop, I shared the subject matter of this blog post and received feedback that it resonated with many. I'm reposting, as it's clear that even after eight+ years being cancer-free, it does still strike a nerve. Have you experienced this?
Original post date: May 23, 2012
(small grammar edits for the repost)
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It’s been said that when things go wrong in life that people will bring you casseroles. Deaths in the family, new babies, moves, and yes, illness.
So there came a day a week or so after my first surgery that I was sitting on my sofa watching some bad TV (because I both couldn’t get off the sofa very well and I enjoy bad TV) when I realized that no one was bringing me casseroles. Nothing was frozen in my freezer to eat later unless I bought it and put it there. Nothing was being delivered by meals-on-wheels, and no one was dropping off food en masse.
My reaction went a little something like this: “Where is my fucking casserole?”
I’d had many people say “let me know what I can do for you” several times and folks were checking in on me. I didn’t feel alone, per se, but I was angry that I was recovering from cancer surgery and was actually alone in my home. I’m an independent person and this was a new feeling for me. My cats were of little help when I needed to reach something off a high shelf. (Luckily when my mom was in town we had the forethought to buy one of those collapsible grabber things. Moment of brilliance right there…these should be standard issue when you check out of a hospital after surgery.) I was getting along ok, but it was tough.
So why was I SO angry about the casserole issue? I don’t even like casseroles, truth be known.
What angered me is that I felt like people didn’t care enough. In hindsight, I now know that I was simply a victim of an idea called the “tragedy of the commons.” Basically, the idea is that we often think that one person doesn’t really make a difference and if we don’t act no one will really notice, because there are plenty of others who are pitching in. Until NO ONE shows up because they all thought someone else was taking care of it. In my case, most everyone thought this…and I took it personally at the time. I cried myself to sleep for an entire month.
After some investigation, I found out two truths: I wasn’t asking for help enough (I will own that piece) and HPV cancers carry a stigma. Sometimes people don’t want to talk about cancer…it makes them uncomfortable, because we all have that moment where a sick person reminds us of both of our own mortality and others who have been sick…sometimes even those we’ve lost. Then, take the already uncomfortably situation of cancer and add on the fact that I got my cancer from a virus…a virus that is spread though having sex. **GASP**
Yep, I said it…I had sex. What a concept. A 34-year-old woman had sex at some point in her life and it gave her cancer.
People simply didn’t know how to navigate this concept. Most people understood the fact that no one opts-in to cancer (most, not all), but there was a stigma here that I wasn’t expecting. And it was when a person very close to me…who knew this wasn't true…told me straight to my face that they thought I got cancer because I was being a slut, that I realized the source of my alienation. Not that it makes any difference if I had chosen to sleep with five people or 500 people in my life, but the truth is that my number of sexual partners is on the lower end. And, a person can get HPV infection from just one partner, it doesn’t necessarily take a village.
I realized that I was now going to have to defend my cancer and that there would be an unspoken discomfort when talking about it. Bullshit. I realized that people were going to support me, but they were also going to keep some distance.
Let me clarify: no one deserves cancer…if it’s in the lungs, or the brain, or the blood, or the unspeakable girlie parts. The last thing we need when going through cancer is distance. The alienation can slip even the happiest campers amongst us into a depression.
Today, I don’t carry any of that bitterness about my recovery time…and I don’t care about the casseroles. Those people who really showed up know who they are and I have forgiven those who were jerks, because I know now that they were only victims of fear and misinformation.
I hope that my speaking about HPV and cervical cancer has reduced the stigma a bit and that people are open now to ask me questions and support my new advocacy role (but many still skirt the issue). And what I’ve learned from all of this is that we all need to just show up in people’s lives when they need help, even if we think someone else has taken care of it.