February 25, 2019: The Loneliness of Heart Failure

One is the loneliest number
One is the loneliest number
One is the loneliest number that you’ll ever do…”

(“One,” sung by Three Dog Night, lyrics by Harry Nilsson, 1968)

If you passed me on the street, you wouldn’t know that my heart no longer functions properly, unable to pump blood through my body as effectively as it once did.  You wouldn’t realize my condition is chronic and progressive, and one without a cure.  You might notice–if you’re paying attention–that I no longer walk quickly uphill and sometimes pause for a moment to catch my breath; besides, there are others on the street walking more slowly than I.  There is nothing visible to suggest that I am a heart failure patient; the telltale bulge of my ICD is hidden by shirts or sweaters.  Yet it’s more than likely that I’ve passed many others whose hearts are similarly weakened, because according to Heart & Stroke Canada, over 600,000 Canadians live with heart failure.  In fact, more women in Canada die from it than breast cancer.

Since I was first diagnosed with heart failure over ten years ago, I’ve found it to be a relatively solitary experience. Only recently, since our return to Toronto, have I actually met other heart failure patients.  However, unlike the cancer community which I’ve been involved with for nearly 20 years, I’ve found relatively few resources or face-to-face peer support programs available to those of us who are heart failure patients, despite the fact that heart disease kills approximately seven times more women than breast cancer, and in Ontario, more women with heart failure die from it than men.    “Heart failure,” I’ve often remarked, “is a lonely condition.”

That’s even more disturbing to me, because loneliness–defined as the “longing for greater social interaction”– is bad for our health. Ruth Livingston, PhD, the founder and director of Living with Medical Conditions, writing in a 2011 Psychology Today article, stated:

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 reduces antibody production and antiviral responses, protective against health risks. Loneliness, then —all alone — is a hazard. 

A 2018 article appearing in The Globe & Mail by journalist Wendy Leung referenced findings from a 2017 research study conducted by a Rice University team.  They found that “loneliness puts people at risk for premature mortality and all kinds of other physical illnesses.”

Why?  Not only is loneliness a source of stress, but they stated, “a sense of being cared for and loved is a crucial factor in our well-being,” something many research studies have consistently concluded.  Some researchers even suggest we are experiencing an “epidemic of loneliness,” and not surprisingly, it is “more pervasive” in countries where social media use is high.  Higher uses of social media often result in a person feeling more socially isolated, not less.  According to a 2018 article published in The Montreal Gazette, British prime minister Theresa May recently appointed a “minister for loneliness” in response to Britain’s growing issue of social isolation.  Meanwhile, in Canada, “research shows …one in five Canadians experience some level of loneliness or isolation.”

One in five patients with heart failure suffers depression, which adversely affects their outcomes and quality of life.  Mental health is a vital consideration for all health care teams who support the over 1 million Canadians with heart failure.  — Ted Rogers Centre for Heart Research, January 30, 2019

Not surprisingly, loneliness often leads to depression.  In a one-year follow-up study with heart failure patients, loneliness was associated with higher levels of depression.  Let’s face it:  loneliness is, quite simply, bad for our hearts, yet it’s not at all an uncommon feeling among heart patients.  Worse, a lack of social support is related to poorer health outcomes, regardless of one’s heart condition. Several studies have underlined the importance of social support on cardiac health.  For example, In three studies of loneliness among adults, those with heart problems had the highest loneliness scores, putting them at greater risk for further complications or death.  In other studies focused on heart failure patients, loneliness was also associated with more hospitalizations and re-hospitalizations.

I’m dating myself, I know, but as I write, the opening lyrics of the song, “People,” plays in my head.  It was a Grammy award-winning song sung by Barbra Streisand in the 1964 film, “Funny Girl”.

People

People who need people

Are the luckiest people in the world…

Streisand was singing about love, not heart failure, but it turns out that we all need some sense of social inclusion and support.  These may well be important factors in disease resistance.  According to one group of Canadian cardiologists, interpersonal support is “a protective factor … associated with lower incidence of coronary artery disease, fewer adverse events, increased longevity and better psychosocial function” (Archive of Cardiovascular Disease, 2015, 108, 417-445 ).

Given the numbers of studies on loneliness and social support in heart failure I’ve found and read (too many to mention here) raises the question why there aren’t more psycho-social support programs for heart failure patients–something I’ve been asking more frequently.  We’re very lucky to have people like Jillian Code, two-time heart transplant patient and founder of the HeartLife Foundation, Canada’s first national patient-led heart failure organization,  or Jackie Ratz, a Manitoba heart failure patient, patient advocate, and founder of founder of a Facebook support group Canadian Women with Medical Heart Issues, each of whom have initiated resources and online sites aimed at supporting those of us similarly diagnosed–work that truly deserves commendation.   But we still need more kinds of psycho-social support resources.

Although I’m relatively new to the heart failure community in Canada, when I was first diagnosed and treated in California, my experience was even more solitary and isolating. Other than one very mediocre education workshop I was assigned to attend, I found nothing even close to the wealth of patient support programs in the cancer community, where I’d been a patient and a volunteer program leader since 2000 (which I continue at Gilda’s Club here in Toronto).  Now, thanks to my extraordinary cardiologist, who urged me to become “engaged” at my very first appointment with her, I’ve begun participating in committees and initiatives concerned with heart failure care,  becoming a “patient partner” locally, and writing from my personal experience as a patient from time to time in this blog.  I hope that this enables me to make a meaningful contribution to help address that “other” part of the heart–the one that sometimes experiences loneliness, isolation, or depression.   Besides, “engagement” is good for my heart too.

Thanks to Wendy Leung’s Globe & Mail article, I learned about a unique initiative by  Toronto graphic designer Marissa Korda.  She designed and launched “The Loneliness Project,”  in the fall of 2017, inviting individuals to share their stories and experiences of loneliness on her online site–a way of telling their stories to others who may be also be feeling lonely. Those who do are prompted by one or more of Korda’s questions:

.  When was the last time you felt lonely?

.  What does loneliness mean?

.  Tell a story of a time you felt most lonely.

.  Describe one of the first times you realized you were lonely.

Writing from your personal experiences of illness, as participants in my writing groups attest, is one antidote for loneliness.  An online community like Korda’s may be one way another way to share your experience and, at the same time, stick your toe in the water to make social connections that help combat loneliness.  You can read more about Korda’s project and the inspiration for it here.

Loneliness may be common to anyone at times, but when you are living with heart failure, it’s important to have social support and to find things to help diminish your loneliness.   Even simple activities like taking a walk, sitting in a sunlit garden, or reaching out to a friend can help combat those feelings of isolation.  Take just a step at a time, but try to re-engage with the things that normally make you feel better.  Reach out; reconnect with friends and family.  It’s good for your health and a powerful way to overcome loneliness–because, As Bette Midler sang in her 1972 album, The Divine Miss M., “you got to have friends…”  :

...And I am all alone
There is no one here beside me
And my problems have all gone
There is no one to deride me

But you got to have friends
The feeling’s oh so strong
You got to have friends
To make that day last long…

(Lyrics by Mark Klingman & Buzzy Linhart)

Writing Suggestions:

  • What is your experience of loneliness as someone with heart failure? Describe it.
  • What helped you overcome it?
  • What images or metaphors best capture your experience or feelings of loneliness. Expand on them and create a poem, a narrative, a song.
  • What has helped you diminish the feelings of loneliness that can accompany living with heart failure from time to time?
  • What advice do you have for the newly diagnosed?

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