When people learn that I have cancer, they usually appear saddened and offer me encouragement, often adding how good I look. When they learn that I have stage IV cancer, their sadness deepens, and they tell me how sorry they are. When they discover that I have stage IV anal cancer, they appear shocked and either shut up or ask in hushed voices how I "caught it."
After four years, you would think I'd be used to the stigma. Don't get me wrong. I step through it every time. I am anything but ashamed of my anal cancer, but stigma is hard to shake.
Facing the anal cancer stigma
Recently, I had agreed to appear in a local television news story about an upcoming event for a local cancer charity along with the charity's director.
Before we started taping, the producer came over to talk to us about our segments. He looked at me and asked, "Where do I know you from?"
I reminded him that the station had just done a story about me and my cancer. "Anal cancer Lady," I said.
"Oh yeah," he replied.
The charity director chimed in, "Don't worry. She won't talk about that."
"Yeah, don't worry," I numbly responded. "What are you saying?!" my brain pleaded. But I kept my mouth shut.
When we recorded the segment, I stuck to the script. I just smiled and said yes after the reporter introduced me as a cancer survivor. I know that if I had some other form of "socially acceptable" or "popular" cancers, they would have mentioned the kind of cancer I have. I never mentioned it because I had already told them I wouldn't say the "a" word.
I felt like such a failure in that moment. I was letting fellow anal cancer patients and survivors down here. What was my problem?
Showing pride as an anal cancer survivor
Later that afternoon, while my husband and I watched the segment on television, I told him what had happened and how I was feeling like an anal cancer advocate loser. He placed a comforting arm around me and reminded me that we have to meet people where they are and not where we'd like them to be. I nodded through quick tears.
Later, I started to realize how entrenched the shame and stigma around anal cancer is. I have this disease, and I still shy away from saying it, just as I did in that moment in the studio.
I have strived to stand tall and hold my head high about being an anal cancer patient since day one. But every once in a while, the shame of my particular diagnosis paralyzes me, and I forget that I can make a choice to step beyond it and say: "I am an anal cancer survivor!"