Cancer Survivor’s Guilt and Its Ugly Cousin

This a post from someone who battled about disclosing her dealing with the prospect of cancer and how she dealt with her guilt after finding out that she was going to be okay.

Freedom

Someone finally said it out loud. I’ve been thinking it since my diagnosis and, finally, someone actually said it. She was an older woman, who was obviously upset and angry about her battle with ovarian cancer. We came together while I was manning a table in the lobby of the cancer center with Sarah Mandel. We were there to talk about breast and ovarian cancer awareness.

She walked up to the table, perused the offerings and thumped an ovarian cancer handout, stating, “That’s me.” We sympathized and talked with her about her journey. At one point, however, she said, “I have stage 3; my friend has stage 1 – which is like having a pimple.”  I turned my face away from her, I couldn’t look at her straight on anymore, but I said nothing. I felt her pain and anger at her disease, but what she said caused me pain too.

I am sure she never would have expressed that opinion directly to her friend. But what she didn’t consider was that there was someone sitting right in front of her who was diagnosed with Stage 0 and I did hear what she said. With that one pronouncement, she made it very clear to me what she thought of my cancer experience. And, my experience didn’t even rise to the level of a “pimple.”

Now I can’t say her opinion surprised me, because I’ve been plagued with such thoughts myself.  Without a tumor and with a Stage 0 cancer diagnosis, I started this journey not even sure I was qualified to call myself a cancer patient.   (And that was despite the fact that I heard those three words everyone else has heard, “You have cancer.”) I didn’t know what to call myself. I didn’t know where I fit in. I didn’t seek out help because I wasn’t sure I was entitled to it. I kept thinking I should just be glad I wasn’t given a death sentence and get over it.

Part of my confusion was from the use of the word “lucky” by my medical team. When I received the initial diagnosis from a physician’s assistant, she used the term profusely. She also told me I would probably need a lumpectomy and radiation. Later, when my doctor advised a mastectomy – removal of a body part and reconstruction – I had to ask – if this is so small and I’m so lucky, why do I have to go through the same operation as women who have “real” cancer?  I truly didn’t get it.

I know now that I was in fact lucky – I didn’t have to worry about death, I didn’t go through radiation, I didn’t suffer through chemotherapy, I didn’t lose my hair. But, did submitting to major surgery, which caused complications, a long period of disability, debilitating body image issues, major scars, emotional pain and suffering, and a second reconstructive surgery, only to be told that, oh by the way, you have LCIS too, which means your healthy breast is now at risk, was that nothing but a “pimple?”

Okay, I realize as I’m writing this that I’m defensively justifying myself.  The truth is that cancer is not a competition and, just as I am enough, so is my cancer.  I certainly did go through less than some one else might have gone through.  Thank God for that.  For that I should be grateful, not made to feel, by myself or anyone else, that I am guilty of not suffering enough to qualify in the cancer games.

Speaking of guilt, I know that by feeling bad about not suffering enough, I am experiencing “survivor’s guilt.” The question of why I am here and healthy, when others are not so fortunate, is painful to ponder. But I have to say, and this might not be popular: Survivor’s guilt has an ugly cousin. When I experience survivor’s guilt I am doing it to myself. When others inflict their judgment upon me that I have not suffered enough, that’s survivor’s one-upmanship.

I thought when I created WhereWeGoNow.com that the biggest sticking point for me would be revealing myself so publicly. It turns out I was wrong. The issue that has bothered me the most is whether I am qualified to talk about cancer when I didn’t go through chemotherapy, didn’t lose my hair, didn’t have radiation, and didn’t ever face the prospect of dying. As I sat there in silence, Sarah immediately responded to the woman’s comment with a gentle reminder that all cancer survivors go through a lot and everyone’s experience is significant and painful to them. I don’t think the woman heard a word she said, but I did and I was immediately grateful again for the advocacy of my wonderful breast nurse navigator. She helped set me straight and reminded me that most of the many, many cancer survivors I have met during this journey certainly don’t have this opinion.

It turns out my “problem” is also my good fortune. When I say it that way, I realize how wrong it is to let yourself, or anyone else, berate you for not suffering enough from cancer. I feel for that woman’s pain and I know she never meant to cause me any suffering. The point is that cancer has caused us all pain and its only remedy is banding together to support our mutual healing.

I can’t be the only one. Have you experienced cancer one-upmanship? How has it made you feel and how do you battle your cancer survivor’s guilt?

For original post and responses go to: Debbie’s Blog

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