Stepping past the anal cancer stigma

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michelelongabaugh529.jpgBy Michele Longabaugh

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 4 cancer, their sadness deepens, and they tell me how sorry they are. When they discover that I have stage 4 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!"

A native of upstate New York, Michele (Coston) Longabaugh moved to Wichita, Kansas, to work as a registered nurse as a young woman. After her relocation to the Midwest she met and married Jerry Longabaugh. She is the mother of three beautiful children, now grown. She was employed as a hospital nurse for more than 15 years before becoming involved in medical device sales in cardiac rhythm management. Now, as a small business owner, she partners with one of her best friends and continues to work as an independent sales representative. Michele continues to reside in Wichita and considers herself an ordinary woman caught in extraordinary circumstances.

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Hi Michele, Im a survivor myself, I've had breast, sarcoma and thyroid cancer so I undestand how it feels to be fighting for one's life; but when I read your story it touched me and I got angry with the judgmental society we live in; it is already terrible to have to go through treatments, anguish, sickness, sadness and all those feelings that you go through! We don't need this on top of it!!! There's no shame to have anal cancer!!! There is no shame to have cancer, anywhere in your body!!! That's just ridiculous!!! Keep your head up, your smile, your courage, keep fighting and live your life the way you love. Georgina ;)

Hi Michele, I am a stage 4 RECTAL cancer survivor. I hear you loud and clear. I can't tell you how many people were praying for my breasts because they just assumed I had breast cancer. I too try very hard to be an advocate for this cancer, but at times depending on the situation, I fall short. I guess it is more important to celebrate the times that we can be an advocate, rather than beat ourselves up for those times we can't. I don't know about you, but this cancer has beat me up enough, I don't need to add to it. Thanks for the very honest blog!

Great article, Michele! I sympathize because I'm a survivor of vaginal leiomyosarcoma. When men ask me where my primary tumor was, I usually flinch. With women, I'm not so embarrassed. Here's my story:

Coca, I'm a longtime sarcoma advocate and still volunteer for the MD Anderson Network. If I can help you in any way, don't hesitate to contact me at suziesiegel at tampabay dot rr dot com.

Great story I too have stage 4 colorectal cancer diagnosed last year @ age 38 so it was hard for me to tell ppl my cancer without feeling a little embarrassment. But now I speak loud and clear about it to anyone who will listen due to the fact that more and more younger ppl are being diagnosed with this cancer. I truly believe this cancer needs more recognition.

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