“Are you still writing?” Dr. R. asked as my appointment was ending. I had admitted, several weeks earlier, that I was struggling with writing this blog.
“Oh yes,” I said, “both blogs, but it’s much easier for me to write the Writing Through Cancer posts than it is for my heart failure site.”
She laughed a little and said, “I think it’s funny that you find it more difficult to write about heart failure.”
We spent a few minutes discussing why that might be so, and that led me to telling Dr. R. about the young woman I had met last weekend. I was leading a series of expressive writing workshops for a three-day retreat with YACC (Young Adult Cancer Canada). In my introduction on Day One, I had mentioned my cancer treatment of 20 years ago was believed to be a likely factor for my heart failure condition. On the final day, the young woman approached me and quietly thanked me for telling them I live with heart failure. She then said she had been diagnosed with heart failure after her chemotherapy treatment ended several months earlier. No one, she said, talks about it, not even in her support group, and she experienced a sense of isolation, the same feelings I had when I was diagnosed–and the initial motivation for writing this blog.
Despite the “epidemic” proportions of heart failure, running neck and neck with deaths from cancer, I was surprised, after my diagnosis, of the lack of psychosocial support resources exist for heart failure patients, something I have written about before in this blog. While I find no shortage of research studies on heart failure or cancer, there are real differences in the “other” literature: poetry, stories or memoir available those affected by cancer vs. those living with heart failure. The arts also play a greater part in the broader treatment of cancer, recognizing the healing benefits of the creative self-expression. Not so in heart failure.
“Heart patients don’t talk,” Dr. James Pennebaker commented in an email to me a couple of months ago. I’d reached out to try to unearth some expressive writing research conducted with heart patients, but the results conducted with individuals vs. those writing together, and were largely concerned with autonomic responses, e.g. lowered blood pressure. He referred to an early study he and his associates conducted in 2000, “Who Talks?” appearing in the February issue of American Psychologist. They looked at different patient illness groups’ (e.g., AIDS, cancer, chronic fatigue, alcoholics, heart disease) use of online support groups. They found breast cancer patients were among those with the highest use of online support groups, participating at 40 times the rates of all heart patients. At the same time, the researchers noted additional research was needed on both internet-based support groups as well as the social context of illness. One benefit of expressive writing groups is that they provide social support, and social support helps to decrease social isolation and depression that often accompanies serious illness.
Yet I cannot help but return to the metaphors we use to describe cancer and the heart. The most common metaphor for cancer is as the “enemy” or the “invader,” which encourages the sense of battle, even fighting together to combat and destroy cancer. Think of the many walks and 5 K runs to support cancer research where participants show up in teams and costumes and the sense of solidarity that results. The heart, by comparison is no invader. It is one of our vital organs, the engine, and the pump that keeps us living. The very nature of how we describe and think about the heart may influence how we talk about it–or if we talk about it–with others when it is impaired or failing.
Cancer patients do talk, and in the expressive writing groups I lead, they delve deeply into topics like fear, the altered body, anger, faith, meaning, loss, or mortality. I remember when I was leading a writing group for medical students and physicians at Stanford Medical School and during the same period, an expressive writing group in the cancer center. For several months, I found the medical group was more guarded, less willing to take a deep dive into those difficult life questions, while, from the beginning, the cancer patients wrote openly, poignantly, fearlessly and were more willing to share their words aloud.
In part, what makes it “easier” for me to write a blog for those living with cancer is related to the willingness of those patients/survivors who write so courageously and deeply of the emotional, psychological and spiritual aspects of a life-threatening illness. Their narratives and poetry, frequently shared aloud, are a key aspect of what continues to inspire my exploration of the shared themes defining diagnosis to recovery or death. In a very real sense, the men and women who have written so honestly and bravely out of illness have been my greatest teachers.
The shared experiences, the stories that come from life–joys, sorrows, trauma, illness, loss– are at the heart of being human, how we connect with one another and build a sense of community. I have found some sense of connection with other heart failure patients since returning to Canada, thanks to Jillian Code and The HeartLife Foundation, and the few heart failure committees where I’ve been “the patient voice.” Nevertheless, I still wrestle with how to dig deeper into that realm of what the “lived” experience of heart failure means: those emotional, psychological and spiritual questions it ignites. Maybe I am rolling that proverbial stone uphill, I confessed to Dr. R., but as one who grew up in gold rush country in California, I still believe “there’s gold in them ‘thar’ hills.” And I’m still digging for it.
What do we talk about when we talk about the heart? I would like to hear what you think.
Writing can help you express those moments when fear, worry, sorrow or other strong emotions arise.
- Have you found a support group of other heart failure patients? If so, describe how it helps you navigate the ups and downs of living with heart failure.
- What are the questions or concerns you have since you’ve been diagnosed with heart failure? Do you experience moments of fear? Depression? How do you deal with those feelings? What helps?
- Do you keep
a journal? Research has also shown that writing in a personal
journal or notebook can help you sleep better, reduce fatigue and adjust emotionally
and psychologically to illness and other hardships. There are many different types of journaling. There is no “wrong” way to
journal. If you decide to begin a
writing practice, buy a journal that you’ll use only for the purposes of your personal writing. Here are some tips for getting started.
- Gratitude journaling: Write down everything you’re grateful for. This focuses your attention on positive aspects of your life. A list of five things daily can help boost your mood and spirit.
- Blog: A blog is a website that you can easily update by writing short posts. Caring Bridge (www.caringbridge.org) is a health journaling site for posting one’s writing online specifically for those experiencing medical illnesses/conditions.
- Stream-of-consciousness writing: Write down everything that comes to your mind. This unstructured, unedited writing will reflect your raw thoughts and observations.
- Art journaling: Combine words with drawings, multimedia, doodles, a scrapbook, etc. to express what you are feeling and thinking.
- Line-a-day journaling: Limit yourself to a single line or sentence for the day.
As little as 15 – 20 minutes a day for 3 months can produce long lasting benefits to your physical and emotional health. However, be aware that if you find yourself beginning to ruminate, that is, writing the same negative thoughts repeatedly, stop. Rumination is not healthy and can make you feel depressed or anxious. If journaling about experiences and emotions leaves you more upset than relieved, it’s wise to meet with a therapist or social worker to talk about what you’re feeling. Your journal can be a tool to introduce what feelings, concerns or worries related to living with heart failure.