CATEGORIES [ SURVIVORSHIP, FEATURED ]

Guilty

BY GUEST BLOGGER | SEPTEMBER 8, 2010

Lymphoma survivor Wendy Harpham, MD, is a writer and author of seven books on cancer survivorship.

Do I look like I'm wearing a cleric collar and walking around in a portable penance booth? I feel that way when healthy survivors open up to me in grocery aisles or at cancer walks, confessing with a nervous laugh or in a lowered voice, I feel guilty. Joking aside, it's amazing how many cancer survivors in remission struggle with survivor's guilt. Health care professionals might wonder what these patients could possibly feel guilty about. Aren't they exactly where everyone worked hard and prayed hard to get them?

Yes, recovery from cancer is a triumph. But some survivors feel guilty about their renewed health, since other patients are still suffering with progressive disease or disabling side effects or aftereffects. It can be unnerving to be thriving at the same time a support group buddy or comrade from the chemo-room is dying. Even when long-term survivors accept the mystery-the Why?-surrounding the unfairness of life, guilt can arise from a sense that what they're doing with their lives is not momentous enough to give meaning to their survival.

Troubled people occasionally ask me, Dr. Harpham, do you ever feel guilty? It's a reasonable question, since I've outlived my prognosis two times over. My situation is better than most patients who contact me-many of whom are younger, braver, smarter, nicer.

Nobody can explain why I keep plugging along while my obits file folder at home grows thick. The newspaper clippings and funeral programs are all that's left of family and friends who had far better prognoses-or were perfectly healthy-when I was diagnosed. Why them? Why not me? Thinking about it gives me the creeps. But do I feel guilty? Not at all. Why should I? I haven't done anything wrong. I'm not responsible in any possible way for anyone else's misfortune.

Drawing the coveted remission card is not like pulling the winning Hawaii-trip raffle ticket out of a bowl. Statistics defines both, but my being an outlier with my clear scans 17 years into my illness does not affect any other lymphoma patient's chance of achieving an optimal outcome. So, no. I don't feel guilty.

Not anymore. Not since a hot Texas day in August of '95 when I was cured of this common malady. To explain, I'll backtrack two more years to a conference where I met another patient, Ellen. She was a hip New Yorker and I was a semi-frumpy Texan, but our shared circumstances acted like friendship Crazy Glue: We were professional writers living with and fighting against recurrent cancer. And we were mothers of three-year-olds.

Juggling deadlines and diapers, we updated and leaned on each other through greeting cards and phone calls. Ellen cheered me on as I was treated with investigational immunotherapy. And I supported Ellen as best I could, an increasingly difficult task once the line reflecting her disease diverged from mine like the control arm of a successful trial. Through it all, we both kept up our writing, hoping to help other survivors.

I remember when she called me from her hospital bed for the last time, asking What does this mean? Reluctantly, having promised her I'd always be honest, I told her the usual medical implications of her latest problem. The following week, whatever unconscious sliver of hope I harbored that a person's will to live could cure cancer was extinguished forever.

That fall, I took my youngest, William, to his first day of kindergarten. Teary mothers around me noisily shored up their courage to let go. Not me. Clear-eyed and grateful, I was relieved to be checking off this one box on my mental list of milestones I hoped and prayed to see.

William and I were walking up the steps to the school when a thought flew in from left field, knocking me off-balance: Ellen is gone; she never got to do this. The mini-backpacks and shiny shoes and mom-and-child intertwined fingers swinging to and fro taunted me, Wendy, you are doing what Ellen desperately wanted to do. Waves of sadness and guilt slowed me to a stop.

Suddenly, Ellen awakened in my head to scold me in that alto voice of hers. Wendy, don't you dare ruin this moment. You insult me by being morose at this glorious milestone. Jerked back to reality by William pulling down on my arm, I knew Ellen was right. Choose life meant nothing if I let sadness and guilt overwhelm me.

Guilt-justified or not-is good only when it helps people do the right things. Feeling guilty about smoking is a good thing when it helps survivors toss out their cigarettes. And survivor's guilt is good when it energizes people in life-enhancing ways. But guilt becomes a problem when all it does is make people feel miserable, keeping them from enjoying life's blessings.

Helping survivors deal with guilt can be tricky business for healthcare professionals. One approach is to teach them, You should feel guilty only if you've done something wrong. But patients can accept this logic and know they shouldn't feel guilty, and yet they continue feeling guilty, just the same.

For me, it will always be sad that Ellen died. More than a decade later, I still miss her. If someone were to accuse me of thinking about Ellen while singing Auld Lang Syne or reaching up on my tippy toes for a welcome-home-from-college bear-hug from William, the verdict would be Guilty, as charged.

But I never allow myself the luxury of feeling guilty about my good fortune, because the most powerful way for me to honor Ellen's memory is to delight wholeheartedly in all that is right in my world.

Dr. Harpham coined the term "Healthy Survivor" while dealing with her recurring lymphoma. She discusses how to get good care and live as fully as possible on her blog, Dr. Harpham on Healthy Survivorship (www.wendyharpham.typepad.com). Learn more about her speaking, advocacy and writing at www.wendyharpham.com.

You can read more on survivor guilt in the upcoming Fall issue of CURE.

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