For the Week of May 28, 2017: The Loneliness of Being a Cancer Patient

Today I write about a subject that I don’t often speak of, nor even give into its darkness very often.  Today I am lonely.  I wonder how many of you who also have Stage IV cancer are lonely.  I can’t be alone.

Lisa Masters, “The Loneliness of Cancer,” Huffington Post, March 6, 2014.

In “The Anatomy of Loneliness,” an essay written by novelist Thomas Wolfe in 1941, he wrote: “The whole conviction of my life now rests upon the belief that loneliness, far from being a rare and curious phenomenon, peculiar to myself and to a few other solitary men, is the central and inevitable fact of human existence.”   Yet, there are periods in a person’s life that loneliness, while “inevitable,” is intensified by circumstance, for example, poverty, old age, loss of a partner or spouse, or having a serious or life-threatening illness that loneliness intensifies and worsens.  The experience of cancer, especially when we hear descriptors like “aggressive,” “terminal” or “progressive,” can thrust us into that state, once described by Susan Sontag as the “kingdom of the sick,” where we feel isolated and estranged, not only from those close to us, but from ourselves.

According to Ruth Livingston, PhD, founder and direction of Living with Medical Conditions, writing in a 2011 article “Curing the Loneliness of Illness,

Being lonely can itself be dangerous to one’s health. Loneliness can double a person’s chances of catching a cold and, worse, lonely people are four times more likely to have a heart attack and, once they do, four times more likely to die from it…Further,… loneliness has an effect on the immune system: it increases genetic activity related to inflammation, a risk factor for heart disease and cancer; and it reduces antibody production and antiviral responses, protective against health risks. Such patterns of gene expression are not, according to researchers, linked to other negative feelings such as depression.  Loneliness, then —all alone — is a hazard. 

In 2014, UK-based MacMillan Cancer Support estimated loneliness put cancer patients’ recovery at risk, finding that cancer patients who are lonely are three times more likely to struggle with treatment plans than those who aren’t.  For example, lonely patients skip treatment appointments, do not take medications as prescribed, refuse certain types of treatment or skip treatment altogether.  Ciaran Devane, MacMillan CEO, commenting on the research, said, “We already know loneliness may be as harmful as smoking, but this research shows…it is particularly toxic to cancer patients.”

Illness is solitary, because suffering is something you always do alone.  It impacts phenomenally on your world view and on your experiences and on how you see the external world.

Author Peter Hobbs, commenting in a 2008 Granta Magazine interview

In his book, The Lonely Patient:  How We Experience Illness (2008), Michael Stein, MD, wrote, “health is comfortable, predictable, unnoticed.  …illness seems to come out of nowhere.  It’s become the unknown, and we’re all frightened by the unknown.”  He noticed that the effect on many of his patients was a kind of withdrawal, becoming physically unavailable for a time, and asking the question, “Why me?”  Loneliness, he concluded, “is a word that captures the inward spiritual condition…by its very nature, it excludes others.  The patient begins to feel out-of-place, lonely, and loneliness if made worse by the severity of the illness.

Loneliness is not an accident or a choice.

It’s an uninvited and uncreated companion.

It slips in beside you when you are not aware…

It takes your hand and walks with you.  It lies down

with you.  It sits beside you.  It’s as dark as a shadow

but it has substance that is familiar…

(“Loneliness,” by Fanny Howe, in Second Childhood, 2014)

Loneliness is a theme expressed regularly in the cancer writing groups I lead.  There are common triggers to loneliness often shared among the members and echoed by the National Cancer Institute:

  • Friends may have a hard time dealing with your diagnosis and not call or visit as they once did.
  • You feel sick post-treatments and aren’t able to participate in the activities or social events you once did.
  • It’s common to feel as if those around you—friends and loved ones—don’t understand what you are going through.
  • Even when treatment is over, you can suffer from loneliness, missing the support and understanding you received from your medical team and feeling vulnerable as your “safety net” of regular appointments is taken away from you.

Remember, although loneliness is common, that “inevitable fact” of being human, it’s not good for your health.  We all need emotional support during cancer treatment and recovery, but each of us has different ways of finding the emotional support we need.  When you’re feeling lonely and blue, it may seem like it takes too much effort, yet it’s important to find something that can help you diminish your loneliness, whether an expressive writing, support or art therapy group or an activity, like yoga.   Perhaps it’s a long chat with a close friend, a loved one or even your pastor, rabbi or a counselor.  Even simple activities like taking a walk or sitting in the sunlight in the garden can help combat your loneliness.  Take it a step at a time, but do take steps to re-engage with the things that normally, make you feel better.

Writing is an antidote for loneliness. –Steven Berkoff

Writing Suggestions:

  • Write about what it is to experience loneliness, whether a poem or a narrative. What images or metaphors best capture what it is to be lonely?
  • Did you experience loneliness after treatment had ended? Describe what it was like.
  • What has helped you diminish the feelings of loneliness during cancer or another serious illness? What advice do you have for the newly diagnosed cancer patient or the cancer survivor completing treatment?

About Sharon A. Bray, EdD

Best known for her innovative work with cancer patients and survivors, Sharon is a writer, educator and author of two books on the benefits of expressive writing during cancer as well as personal essays, a children's book, magazine articles and the occasional poetry. She designed and initiated expressive writing programs at several major cancer centers, including Breast Cancer Connections, Stanford Cancer Center, Scripps Green Cancer Center and Moores UCSD Cancer Center. She continues to lead expressive writing groups for men and women living in the San Diego area and teach creative writing workshops and classes privately for UCLA extension Writers' Program. She previously taught professional development courses in therapeutic writing at Santa Clara University and the Pacific School of Religion, was a faculty member of the CURE Magazine Forums and at the Omega Institute in 2014. Sharon earned her doctorate from the University of Toronto and studied creative and transformative writing at Humber School for Writers, University of Washington, and Goddard College.
This entry was posted in expressive writing, reflections on life, writing from cancer and serious illness, writing from life, writing to heal. Bookmark the permalink.

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