It was midnight and Margit Detweiler, a Prospect Heights-based content strategist and creator of the lifestyle website TueNight.com, was sitting ramrod straight at her home office, squinting at the sea of teal-bedecked browser windows covering her laptop screen.
“It’s the color for ovarian cancer,” explains Detweiler, 48. “As soon as I was diagnosed, I went into freakout mode, which for me means Googling everything. There were so many groups and networks, but I was like, ‘Wait a minute, I don’t know if I identify as a “cancer patient” — I’m still Margit.’”
It was then, she says, that she decided to open up about her illness — via her own social media channels and her website.
“It was one way I could feel some sense of control in what was happening to me,” she says.
Although it’s not necessarily a statement friends want to “like,” some cancer patients and survivors say that sharing their real-time treatment updates and struggles on social media can help them find solace. Not only does it give them a sense of community, it helps them process this strange new reality where hospital stays mingle with family obligations, waiting rooms with workdays.
Research seems to bear this out: A 2015 study from UCLA found that anxiety decreased in breast cancer patients who discussed their experience in Facebook and Twitter support groups.
“I share everything about my life on social media,” says Upper West Side resident Denise Albert, 41, co-creator of lifestyle platform TheMoms.com, who was diagnosed with breast cancer in December. “It would have felt dishonest if I’d tried to cover up the fact I have breast cancer. And why should I? There’s no shame in having it.”
For Detweiler, it’s equally important that her followers see the full picture of what cancer looks like. That’s why her Instagram is a compilation of subjects ranging from chemo treatments to artfully arranged breakfasts: a true snapshot of a large, messy, full life.
“I definitely feel a lot of support in sharing my story,” says Detweiler. “There are my friends, people I worked with years ago, and even total strangers following along. It’s the one thing that gets me teary, knowing how many people are rooting for me.”
Cancer experts agree that opening up on social media can be incredibly cathartic. “It’s so helpful for patients to own and share the experience in their own words,” says Lynda Mandell, a psychiatrist specializing in psycho-oncology. “It’s a life-threatening disease that’s life-changing.”
A status update on cancer, however, comes with more risks than a standard “having one of those days” post. Christine Coppa, 35, a freelance writer in Asbury Park, NJ, was diagnosed with thyroid cancer in 2014 and says there is a lot of stress in sharing something in real time when the outcome is unknown.
“I’ve already gone through treatment, but I’ll still be closely monitored for the next few years,” she says. “What if the story isn’t over yet?”
And while support is encouraged, it can be challenging when followers ask for specific medical advice. Albert emphasizes, “One of the things I’m really firm about in my sharing is that I’m not a doctor — everyone’s treatment plan is incredibly personal.”
And then there’s the stress of always having real-life conversations turn to your health. “Sometimes I just say I’m really sick of talking about myself, and I turn the conversation over to them,” Albert says.
To help fight “sharing fatigue,” survivors recommend dividing and conquering social media accounts. “Looking back, I wish I’d set up a separate Facebook page just to talk cancer updates,” says Detweiler. “I would definitely recommend others consider that, so there’s one place for cancer-specific talk, and another place to go if you need a bit of a break to discuss lighter topics.”
And Mandell cautions friends and well-wishers to be careful what they post about a patient on their personal pages. “It’s one thing for a cancer patient to share their own story on their personal social media profile. But posting details about someone else’s cancer experience without their permission may not be helpful. When in doubt, you should always ask if they’re OK with it.”
One thing survivors agree on: On-screen support is no substitute for an IRL interaction. “I really treasure when a friend messages me and asks me if I want to go for a walk or asks if they can drop off a meal,” says Detweiler. “Sometimes I feel awful and there’s no way I can take them up on it, but I always am appreciative of the offer.”