While doing research for How To Be a Friend To a Friend Who’s Sick, I discovered many marvelous support groups tailor-made to various ailments and circumstances, each meant to help patients, families, friends, or caregivers, cope with the myriad challenges of illness.
In the aftershock of a diagnosis, most of us feel not just physically vulnerable but frightened, confused, isolated, and overwhelmed. Besides doctors, appointments, tests, and treatments, besides our symptoms and suffering, we’re suddenly hit with extreme mortality tremors and burdened with more medical information than we can possibly comprehend.
It’s unrealistic (not to mention economically unfeasible) to expect overworked medical personnel to handhold us as we traipse through the land of the sick trying to understand and adjust to what’s happening inside our bodies. We can’t pick up the phone or email our doctor each time yet another question occurs to us about our upcoming surgery. And our families and friends, even in the Internet age, can’t always find answers to their questions about the side effects of our medications, how to make us comfortable when we’re recovering from chemo, or how to bathe us without hurting our incision.
But, thankfully, hundreds of thousands of peer support groups have sprung up all over the country—some hosted by hospitals, clinics and rehab centers, some initiated by patients or caregivers who recognize the need for a safe space in which to air their feelings and share tips on how to better cope with the situation they have in common.
When I was diagnosed with a relatively mild breast cancer, I ultimately decided against joining a group. I didn’t want to expose myself to women who were worse off than I was, not only for fear they’d give me new things to worry about but because I knew I’d feel uncomfortable airing my comparatively trivial concerns in the presence of patients with far more serious issues.
Though not right for me, I’ve been truly impressed with the support groups I encountered while researching my book, for instance, these:
Alix Kates Shulman’s Alzheimer’s Support Group
For four years Alix and a dozen other spouses, partners, or caregivers of Alzheimer’s patients have met every Monday morning for ninety minutes “to speak candidly of what is unspeakable in polite society or even among closest friends and family.” They share advice on how to bathe, calm, and medicate their patients; keep them from wandering off; subdue their violent outbursts and wild hallucinations; and deal with their incontinence, “the mere mention of which spooks outsiders.” Because everyone in Alix’s group is in the same boat, they know that their anguish, rage, and frustration will be mirrored back to them and fully understood. In a few instances, even after their Alzheimer’s patient has died, caregivers, by now bereft of their friends as a result of their ordeal, have kept returning to the group for companionship and support.
Bruce Feiler’s “Council of Dads”
When Bruce found out he had bone cancer and needed nine months of chemo and a fifteen-hour surgery to reconstruct his leg, he nearly freaked out—not at the thought of his own ordeal but at the idea that he might disappear forever from his twin daughters’ lives. To ensure that they would be surrounded by male guidance, he asked the six men who had most influenced his life to serve as part-time fathers to his girls and, if he died, help his wife care for them and transmit his legacy. (See The Council of Dads: A Story of Family, Friendship and Learning How to Live, Harper Perennial.) Bruce also appointed a “minister of information,” whose job it was to disseminate news about his illness to everyone else and “be polite when I didn’t have the energy or inclination to be.” I’m glad to report that Bruce is flourishing, but neither he nor anyone else involved in his support system will ever forget the life lessons they learned when he was in extremis
The 150 Friends of Alexandra Bloom
Alexandra’s husband, Tom Nishioka, and three of his friends created a website to allow other pals of theirs to help them manage the challenges associated with her newly diagnosed breast cancer. Ten “team captains” took charge of assigning tasks to the 150 (!) people who signed on to the website—such as researching oncologists, looking into health insurance plans, marketing, cooking, or picking up Alexandra and Tom’s twin daughters at their school. Among the volunteers were three “honorary grandmothers,” each of whom visited the children once a week, brought treats, read to them, and spoiled them rotten. (It makes you wonder who got the biggest bang for the buck—the kids or the “grandmas.”
I hope you’ll write to tell me about a support group that has made a difference in your life or the life of a sick friend.
Until then, here’s to good health and friendship!