Coping with a Bad Disease - Community Counts


Medical Author: Frederick Hecht, MD, FAAP, FACMG
Medical Editor: William C. Shiel, Jr., MD, FACP, FACR

(The prologue to this Doctor's View was: "Leukemia - In The Family." I have called the present piece "Coping with a Bad Disease" since I believe it goes well beyond leukemia and applies to any "bad disease.")

Our granddaughter Tania was diagnosed with acute promyelocytic leukemia a little over a month ago. Since that time, her father and mother have provided other family and friends with almost daily updates on Tania's progress and their responses to her illness. We have found these updates a valuable means of knowing a little of what is going on, particularly because most of the time we have been 3000 or so miles away from Tania. But even when we were on the scene, we found the "Tania Updates" quite useful.

The following is an excerpt from a recent "Tania Update" by our son Rick, Tania's father. Rick (Frederick M. Hecht) is a physician on the faculty at UCSF (University of California at San Francisco). With his permission, I would like to share some of his letter with you. I hope that you may find it of interest.

Rick's letter

Every day we have had support in so many ways that it continues to amaze us. Several days a week, friends have dropped off meals for us. This has freed time that would otherwise be spent shopping, planning, cooking, and cleaning to take care of Tania and (her younger sister) Rachel. It leaves us feeling spiritually and emotionally, as well as physically, nourished by our community.

I can't begin to go through the countless errands that friends and family have done that have kept our lives running, or that have meant that Tania could get one of the few foods she could think of eating at a particular time. (The chemo makes it hard for Tania to eat). One of our neighbors checks in daily to see if we need any food. Everywhere we go we feel the support -- whether it is from friends we see on trips to the gym, the staff at our dentist's office, colleagues at work who offer to cover various tasks, e-mail notes we receive, or friends who keep me from obsessing about Tania by making sure I know that just because I have a kid with cancer doesn't mean they will stop roasting me....

Before Tania's diagnosis, I was reading a book I would recommend. It is called "Bowling Alone" and is by Robert Putnam. (The full title is Bowling Alone: The Collapse and Revival of American Community.) For those of you who don't know this book, it is an analysis of role of "social capital" or social connectedness in the function of society and well-being of individuals, and why this is in decline in the US.

After Tania's diagnosis, I skipped ahead to the chapter on health. Here are some of the key findings from "Bowling Alone": More than a dozen carefully done studies in a several countries have found that individuals with close ties with family, friends, and community are between two and five times less likely to die from all causes, compared to individuals who are socially disconnected but are otherwise matched on factors like age, race/ethnicity, education, income, and health at the outset of the study. In other studies, moving from an area with strong social capital to an area with low social capital increased the chance of poor to fair health by 40-70%. Moving from an area with low social capital to one with high social capital was of nearly as much health benefit as stopping smoking -- one of the most effective health promotion steps anyone can take.

Exactly how social capital is linked to better health is uncertain. Researchers believe that this comes from a variety of factors, ranging from decreases in physiologic stress, promotion of healthier lifestyles, better advocacy for high quality health care, and a "safely net" that helps take care of people when things go wrong.

We can't always prevent bad things from happening to good people. The experience we have been through with Tania continues to reinforce my recognition of the importance of social support in facing bad events and getting through them in the best way possible.

To read the follow-up on Tania, please see the Doctor's View Leukemia, A Trip.


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