Social Conflict 6: Support, Struggle, and Advocacy
Synopsis: All women with ovarian cancer deserve to make sense of their disease experience in their own way. Yet society has created social and cultural narratives around cancer that may not fit the needs of individual patients or ovarian cancer patients generally. Some women may not have the ability or desire to be a “hero” or “self-advocate” — or even to identify as a survivor. The “fight” metaphor also inappropriately shapes some patients’ and supporters’ expectations around treatment and recurrence.
Patient voices: “If we put this in the language of a battle, then you know what? We’re all going to lose.”
“It’s helpful to have somebody that you can say things to that isn’t directly affected by what you’re saying. We had a patient in our hospital who would visit with me before she would go down for her treatment. She was in the same situation as me — her sister had died of ovarian cancer. She would sometimes tell me that she didn’t know if she could keep doing it. The last time I saw her, she said, ‘I’m so grateful to have somebody that I can say things to who isn’t saying “Oh my God, oh my God, no.”’ Who wasn’t crying over it. Just listening, accepting what she says, saying, ‘It’s okay to feel that way, but I get why you can't say that to your kids or your husband.’ I think that’s an important part of the team.”
Group analysis: Patients, supporters, nurses, advocates, and others expressed a widespread desire to find new ways of talking through patients’ journeys through ovarian cancer, finding their friends and loved ones ill-served by the “fight” metaphor. This narrative, they suggested, fails to respect the high early mortality rates from ovarian cancer, positioning these patients as “losers” in the fight. Just as importantly, it fails to acknowledge the significance of recurrence. Our groups encouraged the development of new language to talk about cancer, particularly for friends and family members who may not realize that they are implicitly judging their loved one’s decisions.
Design principle: Any new resource for ovarian cancer should use language and concepts developed by patents that reflect their own experience. Resources should acknowledge that communicating about difficult subjects like cancer is a skill to be built up over time.