Social Media Helps Patients Find a Community

For years, the chatty among us have relished the chance to swap stories in doctor's office waiting rooms. Hearing about the experiences of those with similar ailments has always offered affirmation and valuable information.

Now, virtual waiting rooms have sprung up all over the internet. For millions of Americans with health issues, feelings of isolation have gone the way of the mercury thermometer. Social media pages hosted by patient advocacy groups, medical facilities, and health sites like Healthline.com offer information on everything from a mysterious rash to multiple sclerosis.

Ariana Medina of Peekskill, N.Y. studies psychology and also suffers from mental illness. She embraces social media and participates on Healthline's Help For Depression page on Facebook.

For Medina, such online communities are much more rewarding than simply coming home from a doctor's visit with a pamphlet. “Now, we have choices—read the article or watch the video or check out the pictograph,” she said. “Not only are [patients] able to get health information, they are also able to gain support due to social media and not feel so isolated in their illness, which is an amazing stride, especially for people who have mental illnesses, an invisible illness with so much stigma wrapped around it.”

Medina is one of 250,000 fans of Healthline's 11 Facebook pages. Healthline's most popular condition-specific pages are for multiple sclerosisCrohn's diseasebipolar disorderosteoarthritisrheumatoid arthritis, and HIV/AIDS.

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Facebook Is Not a Doctor Substitute

Medina cautions that patients should always check with a doctor when seeking health advice. She said the Help For Depression page, like many other online forums, is “often loaded with horror stories of side effects” from visitors who are not medical professionals.

Kevin Vicker, who handles social media for the National Stroke Association (NSA), told Healthline that the importance of drawing a line between medical advice and non-clinical information and support is an issue on their Facebook page as well.

“Sometimes we have people that ask, either openly or directed at our page through a private message, that they're experiencing such and such symptoms, and they ask if it's a stroke,” he said. “We don't give medical advice, but we drop a link to stroke warning signs that tells them if they're experiencing stroke symptoms to call 911 immediately.”

One symptom of stroke is a sudden severe headache with no known cause, he said. “But how often do we get headaches? How do we distinguish between a migraine and a stroke? We're not in the business of diagnosing, but we can get people connected with doctors,” Vicker said.

Saving a Friend's Life

Susan Grupe Wahlmann is one of the NSA page's 43,000 fans. The Illinois woman suffered a stroke two years ago, and she had her husband share the terrifying experience on Facebook from the moment it happened.

She told Healthline that she learned from a blood test that her stroke had been caused by taking a form of birth control that led to excess blood clotting. She shared that information on Facebook as soon as she learned it.

After Wahlmann's post, a friend of hers taking the same contraceptive got checked by a doctor and learned that she also had a blood clot, Wahlmann said. “We all can get help through social media, I love it. I am so grateful for the Facebook pages. Things would be so different had this happened 20 years ago,” she said.

Fans of Healthline's Facebook pages say the medium offers them validation and hope for a cure. Hearing about the suffering of others often puts their own illnesses into perspective. Plus, news about medical breakthroughs and new research keeps them at the forefront of managing their conditions.

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The Numbers Tell the Story

The impact of social media on healthcare is staggering, especially among young patients ages 18 to 24. Ninety percent of them say they trust the health information they receive through social media, according to Search Engine Watch.

More than 40 percent of people also said they would consider information obtained on social media when choosing a doctor, hospital, or other medical facility, according to Demi & Cooper Advertising DC Interactive Group.

One out of five smartphone owners has a health app on their device, and almost half of the unique visitors to Healthline.com access the site via their mobile phones.

As for sharing, 30 percent of adults said they would post information about their health on social media for other patients to view, Fluency Media reports. Almost half said they would share it with a doctor.

Opening Doors For the Isolated

Lenora Houseworth manages social media pages for the Crohn's & Colitis Foundation of America (CCFA). She told Healthline that social media engagement for her organization has grown 200 percent in the past three years. 

Houseworth said people who suffer from gastrointestinal illnesses not only face embarrassment, but often isolation and skepticism.

“They don't necessarily look sick, but inside, they feel awful. Often times social media has become the only touch point that patients have for medical information. A lot of these people live in boondocks USA, or they're overseas, and don't have access to premier GI doctors.”

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