If you have been diagnosed with cancer, or you’re dealing with a rare disease or have lived through a suicide attempt, you might have found inspiration from fellow survivors you’ve met in person or followed online — people who seem to have risen above the disease you share and are not only thriving, but speaking out and offering support.
Unfortunately, being an advocate for a physical or mental health condition doesn’t necessarily lift people out of its reach. When leaders and role models die from the disease they’d taken on, it can be chilling and discouraging for those who looked to them for hope. Even so, survivors can move forward past their initial sadness and grief.
[See: 10 Lessons From Empowered Patients.]
When the annual Breathe Deep DC 5K walk kicks off from the Washington Monument in November, Jerry Sorkin won’t be there, but his presence will be missed. Last October, Sorkin, the lung cancer advocate who spearheaded the initiative for the LUNGevity Foundation, and later became vice chairman of the board, died of the disease.
Sorkin, a nonsmoker, was diagnosed with Stage 4 lung cancer in 2007 at 42. But he dealt with cancer in several guises, as a young person with recurring Hodgkin disease, to much later, when he underwent treatment to remove cancer that had spread to his brain. Sorkin seemed like a consummate survivor and his passing left a shocked and grieving community.
“When Jerry passed away, I received calls from many patients who were worried,” says Katie Brown, LUNGevity’s vice president for support and survivorship programs. “Their anxiety levels were really high. They started to feel uncertain about whether or not their cancer is going to come back.”
There are no easy answers for survivors. “They want assurances that we really can’t provide,” Brown says. “Other than to let them know we’re working very hard to fund more research and there are more treatment lines in the pipeline. They just want to be reassured that they still have options out there.”
Brown feels a special connection to Sorkin. After she lost her father to lung cancer, she left her previous career to volunteer at LUNGevity. She recalls how Sorkin listened to, encouraged and mentored her as a budding advocate, even as he coped with lung cancer himself.
When someone dies, other patients may experience survivor guilt, Brown says: “We really encourage people to talk about how they feel and turn that frustration and sadness into positive action, in terms of reaching out and advocacy, or supporting someone else.”
[See: 7 Things You Didn’t Know About Lung Cancer.]
Jill Feldman of Deerfield, Illinois, misses Sorkin on many levels. Cancer haunts her family history, taking her grandparents, parents and other relatives. After losing several loved ones to lung cancer, she decided to become an advocate with LUNGevity, in its early grassroots stage at the time.
Then, Feldman became the patient. “I was 39 years old,” she says. “I had four kids.” Being diagnosed herself was “surreal,” she says. Yet it felt right to continue as an advocate: “It allowed me to choose the role that lung cancer was going to have in my life.”
Feldman and Sorkin were the first LUNGevity board members who were patients as well. Sorkin helped move the Chicago-based nonprofit in a national direction, she says. “Between his personality, his passion, his connections, he was ready to jump in and provoke change,” she says. They remained friends who kept in touch as he did his work in Washington.
When Sorkin died last fall, it jarred Feldman. “He was a brother in the fight, so to speak,” she says. “That piece of it also forces you, as a patient, to face your own mortality, too. A lot of emotions come up.”
The loss of a peer hits advocates hard, Feldman says. A few will say, “I can’t do this.” Among those who carry on, she says, “you find incredible support from the community. From being involved. You realize lung cancer is so much bigger than your personal story.”
Advocacy Lives On
When Amy Bleuel, founder of Project Semicolon, took her own life in March, her death at 31 shook those in the mental-health community . Bleuel’s project had adopted the punctuation mark as a symbol of continuing a life, just as a semicolon continues rather than ends a sentence. The idea resonated for many people struggling with issues such as depression and suicidal thoughts, inspiring many to get semicolon tattoos.
It’s a delicate situation when a suicide-prevention advocate ends his or her own life. Presenting a safe, thoughtful message to the public poses a challenge for mental health experts and media outlets. It’s a matter of recognizing the person’s life but not glorifying; acknowledging the cause of death without dramatizing; and keeping vulnerable people from losing hope. A real concern is avoiding suicide contagion or copycat attempts, a proven risk.
“In the world of suicide prevention many of the advocates, especially over the last couple of decades, have primarily been loss survivors,” says Dr. Christine Moutier, chief medical officer with the American Foundation for Suicide Prevention, or AFSP. “Now that the stigma is going down, we actually have more and more people with their own lived experience — meaning that they’ve had their own suicide attempt — who have come out to be part of the advocacy movement. Which is fantastic and probably a game-changer for the field.”
However, Moutier notes, both of those groups are at higher risk of suicide, by nature of their genetic inheritance, experience of traumatic loss and for those with lived experience, the underlying risk factors that have already shown up. “Suicide is a complex result of health and life factors that converge at one moment in time,” she says.
The experience of losing an AFSP volunteer to suicide is relatively rare, Moutier says. Far more common is hearing from volunteers about the feelings of family and connection they gain from their shared mission, along with an acquired sense of purpose and meaning from working toward the goal of helping other families never have to go through what they have.
[See: 9 Things to Do or Say When a Loved One Talks About Taking Their Life.]
Sarah Schuster is the mental health editor at The Mighty, an online storytelling community for people who live with chronic illnesses, mental illnesses and disabilities. Schuster never met Amy Bleuel in person, but they had exchanged emails through their professional relationship.
When Schuster wrote several pieces about Bleuel’s passing, she knew it would be difficult to take. “It was hard to see people’s reactions,” she says. “They were shocked.” The response was a mixture of positive messages, she says, as well as people questioning, “If this is a suicide, what does it mean for us? If she can’t make it, can we make it?”
Schuster believes it’s time to fine-tune the message to people at higher risk for suicide and expand it beyond words of inspiration alone. “We don’t [and need to] talk about: There’s research going on about how to prevent suicide. We need more funding. We need more means restriction.” (“Means restriction” refers to limiting access to lethal methods used for suicide.) Rather than predict that Bleuel’s death will spur advocates to do even more, Schuster keeps it low-key: “I would say: We will just continue.”
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When Health Advocates Can?t Save Themselves originally appeared on usnews.com
