It was like falling off a cliff. That’s how Rebecca Matos describes how she felt when she learned she had breast cancer at age 32.
She felt alone. Most of her family and friends couldn’t bear to talk about her cancer. For years, she felt trapped between her everyday life and her cancer life, unable to merge the two worlds. That feeling stayed with her until February, when she published a blog she kept private for two years.
“I needed to let go and be free,” says the now 37-year-old marketing project manager for the American Institute of Chemical Engineers. “Blogging and reaching out allowed me to see mortality as more normal. It makes me feel like I’m not the only person going through this.”
Writing about the ugly side of cancer — the chemo, constipation and risk of infertility — on a public blog wasn’t an easy choice. In her blog, called the small c, Matos explains that she kept her cancer semiprivate for years because she didn’t want the wrong kind of attention. “I didn’t want to dramatize my cancer so it would take over my life, my job and my home,” she said in an interview with U.S. News.
Matos is now in remission, but she continues to turn to the online support of people who identify with the changes in her life, and she’s not the only one. About 1 in 5 Internet users go online to find others with similar health conditions, according to a 2011 Pew Research Center report.
Nowadays, people leave a digital footprint wherever they go, from an Instagram picture of their lunch to posting a status on Facebook while on vacation. But when it comes to exposing a medical condition, there are a few things you should consider before you click “publish.”
Your reason for sharing. Many, like Matos, share their stories online as a way to connect with others and relieve the burden of their disease. “In a way, I feel like I’m getting therapy,” Matos says.
A 2013 literature review by University of Melbourne researchers found that the use of social media in chronic disease management helped patients find emotional support. But you don’t always get the good without the bad. While it may feel great to rant about your terrible experience in the ER, keep in mind how people might perceive your posts, says Dr. Jennifer Wolkin, a psychologist at the Joan H. Tisch Center for Women’s Health at NYU Langone Medical Center.
She adds that people have a tendency to overshare on social media, which can be perceived as attention-seeking behavior. Before you post, Wolkin recommends asking, “What am I seeking?” It’s human nature to look for belonging, but when satisfaction is based on how many likes a post gets, social media can backfire as a support system. Especially if patients have low self-esteem, they can fall into the habit of using social media to “seek immediate acceptance and attention, rather than to connect and/or show care for others,” she adds.
The platform. Not all social media networks provide the same support and connection. While Matos feels comfortable writing about cancer on her blog, she says she rarely posts about the disease on her personal Facebook page, simply to keep a separation between her friends and her disease.
Some patients and survivors find it easier to share their stories on platforms limited to those who can relate. Matthew Zachary, a U.S. News contributor who was diagnosed with brain cancer at age 21, has been in remission for 20 years. In 2007 he founded Stupid Cancer, a youth and young adult cancer advocacy nonprofit, to help build a community for young cancer patients and survivors. “People … are proud to [have] a community that understands them,” he says. “This just didn’t exist in any real way even four years ago.”
Recently, the nonprofit launched a free app called instapeer that helps connect people with similar health conditions. “When you’re diagnosed, you’re totally isolated. The chance of you meeting someone with a similar story is slim,” says Stupid Cancer co-founder Kenny Kane.
The impact on your professional life. It’s common for potential employers to scrape your social media profiles before calling you in for an interview. If you’re in the wake of applying to new jobs, it may not be the right time to post openly about your diagnosis if you’re not comfortable with employers knowing, says Lucia Savage, chief privacy officer at the office of the National Coordinator for Health Information Technology. “While it’s true that [there is] a good set of rules to protect from the adverse effects of stigmatization [and] employment discrimination, you want to make sure you don’t have to go that far,” Savage says.
Another option that allows patients to talk openly without the consequences that come with sharing their identity is to post anonymously to an online discussion board hosted by a website like Stupid Cancer, Kane says. He also recommends websites such as Caring Bridge or Care Pages, which allow you to control your audience and only share information with specific people.
What you post. “Whether it’s a selfie at the hospital or checking in on Facebook at the ER, it’s easy to jump in this world of narcissism and needing love on social media to say, ‘Hey, I’m hurting. Show me some support,'” Kane says. To be “your best digital self,” Kane shares two pieces of advice with cancer survivors: Think before you post, and train your friends and family how to handle your diagnosis.
When it comes to sharing medical information, Michael Kaiser, executive director of the National Cyber Security Alliance, says you should take extra safeguards to ensure it remains private. “Take security precautions in [privacy] settings, think about the consequences about what you post and connect with confidence,” he says. The more information available to a public audience — such as your address, employment and medical history — the higher risk you face of medical identity theft, he says.
Roughly 1.8 million people were people affected by medical identity theft in 2013, a 20 percent increase from the previous year, according to a survey by the Ponemon Institute, which researches data protection and privacy. To protect your information, the Federal Trade Commission advises consumers to keep medical information offline unless you are corresponding privately with a physician you know. In addition, never post your Social Security number, and always read the privacy policy of the social networks you use.
Once your information is out there, you may be handing over ownership, depending on the terms and conditions of the social media you use, says Erin Fleming Dunlap, a shareholder with the law firm Polsinelli who specializes in privacy and security issues related to the Health Insurance Portability and Accountability Act.
“The biggest warning for patients is that data is valuable, and the more that consumers put out there, the more of a portrait they paint for others to evaluate anything in connection with that individual,” she says. “A number of third parties having a profile about you can be used to make decisions about you moving forward.”
While the privacy of your medical information is protected under HIPAA, the act only binds organizations like health care providers and their business associates, not social media groups like Facebook. It’s important to always review updated terms and conditions to stay informed on how your information is being used, she says.
Your relationships. “Fact is, bad news travels fast,” writes Matos on her blog. If you’re ready to open up about your diagnosis online, she says you have to be ready to face a range of responses. “People feel sorry for me [or] don’t agree with me. …You have to be open to criticism, just like you have to be open to criticism in life in general,” she says.
While new devices allow you to broadcast every moment of your life, that doesn’t mean you should, says Zachary, adding that not everyone on your Facebook feed will understand or know how to react to posts about your diagnosis.
“It’s tough love, but you reap what you sow,” he says.
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What to Consider Before Posting Your Diagnosis Online originally appeared on usnews.com
