To tell or not to tell?
Divulging your illness online not for everyone
My heart skipped a beat when I saw actress Julia Louis-Dreyfus’ disclosure on Twitter that she has breast cancer. In a completely matter-of-fact way, the Emmy Award-winning actress tweeted:
“1 in 8 women get breast cancer. Today, I’m the one.” Like that, the world knew about her diagnosis.
As a cancer survivor myself, I’m all for being more open about our medical diagnoses because they reduce stigma, allow us to get the help we need, and — if anything — be authentic at a time of much stress. But self-disclosure, especially via social media, isn’t for everyone.
Despite greater acceptance, there’s still considerable stigma about various cancers and other serious conditions. You may be blamed for your disease, ostracized by family or friends, fired from your job (even though that’s not legal in the United States) or left by a loved one.
“It’s got to be a very individual situation,” said Steven Joffe, chief, division of medical ethics, at the University of Pennsylvania Perelman School of Medicine, since some people may want to choose to protect their privacy.
For a star such as Louis-Dreyfus, already a public figure with a history of speaking out on social causes, there’s little downside and a much bigger upside in terms of drawing media attention to a disease that will strike more than
230,000 women this year, according to the American Cancer Society, and kill 40,000. The public outpouring of support — everyone from her current Veep costars to former vice president Joe Biden — has only been supportive.
Still, there are possible repercussions. For instance, actors must remain insurable to get work. In this case, HBO, which produces Veep, says it supports Louis-Dreyfus and will delay production of the series as necessary. But not everyone facing a serious illness finds such an embrace from his or her employer.
QUESTIONS TO ASK BEFORE MAKING DISCLOSURE ONLINE
Are you sure of the diagnosis? With more than 12 million adult misdiagnoses a year, according to a 2014 study published in the journal BMJ Quality and Safety, you don’t want to post this kind of news unless you are sure. That’s one in 20 patients. Wait until you have confirmation.
Have you already told those nearest and dearest to you? Before any public disclosure, talk with family, close friends and especially your kids.
“You may want to first consult with your physician or a counselor. With a partner, you may both be sharing feelings of helplessness and fear — try to talk about it openly, and be there for each other,” says Susan Brown, MS RN, senior director of education & pa- tient support at the Susan G. Komen organization. With children, decide how much to say, but make sure you give honest, real answers to their questions, which can help lessen their fears.
Remember: Once you post online, you won’t be able to control who knows or how the news is shared.
What is your motivation for sharing the diagnosis? Mike Threadgould, a social media manager at the Livestrong Foundation, suggests people think about the purpose of posting by asking themselves these questions: “Is it for catharsis? Is it to keep friends/loved ones informed? Is it to connect with other patients/ survivors? Or do you just want to raise awareness of the issue?” He adds that “establishing your goal will help guide where and with whom you share this information.”
How will your colleagues and boss react? While the Americans with Disabilities Act protects the jobs of those with serious diseases, the real world is less than perfect and people have been fired either directly because of their diagnosis or for trumped up reasons. No one wants to be fighting a lawsuit to keep their job at the same time as undergoing treatment. If you’re worried, find out how other sick co-workers have been treated — or talk with a lawyer. Don’t necessarily trust a human resources manager to keep your news confidential.
Are you ready to answer the questions you’re likely to be asked? Friends are likely to ask all kinds: What is the prognosis? Will you lose your hair? What kind of treatment is planned? This may happen in person or online. Do your homework ahead of time.
What am I hoping to achieve with an online disclosure? Joffe said Louis-Dreyfus was sending a very clear message in her tweet, that is, “I’m lucky because I have a wonderful family and friends, great insurance, and lots of support. Others are not so lucky,” Joffe added. “One thing she accomplishes by doing this is reducing the stigma of breast cancer.”
Do you understand the possible negative ramifications? Don’t act in the spur of the moment or emotion. Threadgould cautions that if you post to Facebook or Twitter to remember you are putting your diagnosis “out there for everyone forever, including potential employers a decade from now.” It’s also possible that public disclosure could impact your eligibility for certain kinds of insurance such as longterm care, disability or life.
Finally, my last piece of advice: Be sure to make your own decisions but, if necessary, ask for help from a wise friend or therapist. Always, weigh the pros and cons of disclosure vs. privacy. Take small steps at the beginning to determine your own comfort level and see how people react in your own offline circle before posting on social media. Then, only when ready, type and hit post. You may be surprised, as Joffe said, “How very meaningful these online communities are.”
HBO, which produces ‘Veep,’ says it supports star Julia Louis-Dreyfus and will delay production of the series as necessary. But not everyone facing a serious illness finds such an embrace from his or her employer.