When it comes to disclosing illness on social media, how soon is too soon, and how much is too much?
Three years ago Lisa Bonchek Adams, suffering from breast cancer, tweeted about every aspect of her condition to more than 15,000 followers and countless others on Facebook. Adams, who later died, was severely criticized for over-sharing the details of her illness. Journalist Emma Gilbey Keller asked rhetorically in The Guardian, “Should there be boundaries in this kind of experience?”
Meet Aimee Rouski, a spunky and outspoken British teenager with a penchant for short skirts and body piercings. Rouski suffers from Crohn’s disease, a kind of inflammatory bowel disease that disrupts the entire digestive system. After years of suffering, including incredible pain, multiple mouth ulcers, and constant stomach cramps, Aimee finally had an ileostomy, a surgical procedure in which her small bowel was taken outside of her abdomen and covered in a bag that collects waste.
To help inform others, Aimee posted about her illness on Facebook in late May. She wrote:
“My Crohn’s has left me with a permanent ileostomy, no large intestine, colon, rectum, anus, or inner thigh muscles as they were used for plastic surgery on my wounds.
I’ve always been okay with the stuff that has happened to me, but some people have real difficulties accepting these things so I just want to say this: No one will know unless you tell them.”
She also posted several photos of herself, including one with her ileostomy bag.
Aimee now has nearly 100,000 followers on Facebook, and more than 14,000 have written messages of support, such as this moving post: [from Narelle Agrela in Perth, Australia]
“Your (sic) a beautiful young women with a whole life ahead you, keep up you're positive attitude and stay strong as living with Crohn's disease myself for 21years it's a silent disease no-one understands unless they have it.”
Responses to Aimee’s disclosures have almost all been supportive, including the one from Michael Osso, president and CEO of the Crohn’s & Colitis Foundation of America. Osso told me that he praised Aimee for sharing her story publicly because it “becomes a source of hope and strength for others going through similar experiences.” I wasn't able to reach Aimee for comment.
Steven Joffe, MD, associate professor of Medical Ethics and Health Policy at the University of Pennsylvania Perelman School of Medicine, similarly added: “[Aimee] is a courageous young woman who, by disclosing her health information and sharing her photos, is helping to educate the public about a serious and life-changing illness and to reduce stigma.”
To a large degree, I agree. It’s for those very same reasons that I’ve written in the past about suffering from depression and having had cancer (including multiple surgeries and chemotherapy). The support from friends and strangers alike has been tremendous and, from reader emails, I believe other sufferers feel less shame, more connection.
But before you upload any photos or make any disclosures, listen to what Arthur Caplan, PhD, founder and head of the Division of Bioethics at New York University Langone Medical Center, had to say. He was less enthusiastic about such public disclosures. And at the very least, he wanted people like Aimee (and me) to ask themselves certain questions:
Do you understand what you’re doing?
“I don’t think it’s a good idea to post personal medical information publicly at all,” said Caplan. “You really have to think carefully about what it means in this day and age to post stuff that lives forever out there on the cloud. I’m not sure a teenager — or for that matter anyone — is really thinking that way.”
Do you understand the risks involved?
“Someone may look at those pictures and say you’re not the kind of person we want to admit into our college,” Caplan warns. “Or what if a prospective employer reads it? Someone considering you for disability insurance? [And then] someone might say I don’t want to date her. She’s sick.”
I certainly think Caplan’s on the money when he speaks of employers and insurers. As for potential dates, really, who would want to go out with someone who had a problem with your health status?
- Think it through: Taking the time to understand both your motivations and the possible repercussions is crucial. This is especially true for younger people, who don’t always appreciate that online disclosures are forever. Parents and teachers should provide thoughtful advice, which is not to say that they should just say no. Caplan rightfully reminded me that there’s “a generational difference” and that older folks don't have the “same tolerance for sharing details of your life” that younger ones do.
- There can be down sides: In addition to Caplan’s caveats, I’ll add my own. Although I have written many times about the details of my cancer, I’m still sometimes surprised when someone brings up personal details they’ve read when we are face to face. It’s often awkward, and it sometimes happens when I’m just not in a frame of mind to talk about cancer.
- There are many, many benefits: Talking about illness may benefit not only the person who is ill and needs support, but others also suffering from the same condition. Public disclosure fights shame and stigma and helps others feel less alone. As Aimee wrote in her initial post: “People who know will still love you and still find you beautiful. Your illness is nothing to be ashamed of or embarrassed about.”
I could not agree more. How about you? Let me know in the comments section below.
USA TODAY columnist Steven Petrow offers advice about living in the Digital Age. Submit your question to Steven at firstname.lastname@example.org. You can also follow Steven on Twitter: @StevenPetrow. Or like him on Facebook atfacebook.com/stevenpetrow.