Here are some points to ponder as you try to decide whether to establish a charity and how to make it work.
Activism isn’t for everyone. Here are some points to ponder as you try to decide whether it’s for you—and, if it is, how to make it work.
Mull your motives. “I’ve seen people get wrapped up in the organization as a way to cover up their own pain and their own grief,” says Brad Zebrack, PhD, associate professor at the University of Michigan School of Social Work and a 25-year survivor of Hodgkin lymphoma. When he decided to go into oncology social work after his own brush with cancer, a professor asked him, pointedly, “Are you really going into this to help other people or because you need to help yourself?” The question offended him at first. Then he came to understand that the motivation has to be about the patients, not about himself.
Keep your life in balance. Friends or family should help you set boundaries so activism doesn’t dominate your life. “It’s OK to take time off!” says Penny Damaskos, LCSW, a certified oncology social worker who coordinates the post-treatment resource program at Memorial Sloan-Kettering Cancer Center in New York City.
Don’t have delusions of grandeur. “It’s a fantasy that you can save everyone,” Damaskos cautions. “You can only do so much.” Adds Molly Daniels, deputy president of the American Cancer Society Cancer Action Network: “We try to guard against getting volunteers all excited and active and then something doesn’t happen and they say, ‘We failed.’ It took 10 years for us to get the FDA authority over tobacco.”
Do you really need to set up your own shop? Scaling up to create a viable nonprofit takes a heap of work. Sometimes, bringing your ideas and enthusiasm to an existing group may be a better strategy.
Susan Leigh, RN, a founder of the National Coalition for Cancer Survivorship and a survivor of three separate cancer diagnoses, says advocacy is often the result of the emotions that result from cancer.
“Many of us who accidentally landed in the ‘kingdom of cancer’ often move into advocacy out of anger, fear, outrage or total helplessness,” she says. “While we may never have expressed such emotions before, a diagnosis of cancer can catapult even the most humble and submissive into action.”
Leigh, who describes herself as an introvert before cancer, decided to become an oncology nurse after recovering from Hodgkin lymphoma in 1972.
She says advocacy offers a range of involvement options, from becoming a volunteer at a hospital or cancer center to helping a friend navigate the cancer journey.
“Many of us simply want to help others have an easier time getting through cancer,” she says. “Others focus on social justice and equal opportunities for all to access high-quality cancer care. Yet others, including me, really want to make sense out of our suffering and to have these difficult experiences mean something.”
Leigh emphasizes, “I want to—need to—give back.”