10/28/2013 06:43 pm ET Updated Jan 23, 2014

Social Media and the Unmasking of Psychiatric and Neurological Illness


A good friend of mine from college, we'll call her "L" is living a nightmare. Her 56-year-old mother was recently diagnosed with Frontotemporal Dementia (FTD).

"FTD can manifest itself in a number of different ways," notes L, "but it is a progressive disease and tends to affect things like social and personal behavior, speech, levels of apathy and ability to focus."

FTD, which commonly affects middle-aged adults, is a disease that progresses steadily and rapidly without treatment. It has an average length of progression of eight years from the onset of symptoms.

According to L, "It mostly affects [my mother's] ability to engage and empathize with others."

This diagnosis and the impact on L's family is tragic in and of itself, but in the past, sufferers of dementia -- or of other diseases and conditions that impair judgment and cause an inability to navigate conventional socialization -- and their families, had some degree of control over the privacy of their illness.

With the massive expansion of social media platforms -- everything from LinkedIn to Facebook -- that will go to any length to rope in users, mental and neurological illnesses are given a much more public face.

L's mother used social media prior to the onset of her symptoms, and continues to do so.

L describes her mother's former use: "Like many 40- to 60-year-olds, she was not quite sure how to use Facebook or aware of how to be 'socially acceptable' on social media. She would "like" a photo of my siblings here or there, or post a random status."

She adds LinkedIn was a useful tool for her mother, who was attempting to get freelance work.

The general population of social media users, however others may feel about what they choose to share, at least have the awareness of and control over what they're revealing about themselves.

Social media, however, presents a very public way of witnessing a person's psychological or neurological status that had never been an issue until certain platforms made it an option. This becomes more of a reality as older generations are signing up and logging in.

According to L, Facebook and LinkedIn now highlight some of the symptoms of her mother's disease.

"My mom will send non-professional messages on LinkedIn or accidentally sign into my dad's account and contact all of his contacts because she doesn't realize she's on his account."

On Facebook, there are added complications. "She'll wish someone a happy birthday weeks before their birthday or write strange, nonsensical things on my pictures and statuses," notes L. "It's difficult and cringeworthy at times to watch my mom interact on social media."

She adds that, "for so many people, social media is a mask to hide behind, for [her] mom, it's something that reveals her condition, even if she isn't aware of it."

Facebook also makes it clear when someone suffering from severe manic depression, for instance, is depressed or in an upswing. On a "good day," she reactivates her account, if only briefly, to fill friends' walls with similar gibberish to that which L describes.

Many agree there are upsides to social media, but it presents real hurdles, including potential stigmatization, when it "outs" someone with a disease who does not realize she is being outed.

Could social media have any positive outcome for users with psychiatric and neurological conditions?

Autism, for one, is an oft-stigmatized and highly misunderstood disorder. In some cases, access to social media can help raise awareness about conditions like autism by showing the affected individual has the capacity to function in ways not necessarily inferior to the functioning of others.

Among my Facebook friends is a high-functioning, non-speaking autistic man who regularly posts insightful blurbs and his own poetry and photography.

L also notes her mother's ongoing use of social media isn't all bad.

"Because FTD makes it so difficult for her to engage and empathize, social media feels like an important medium for her to express herself and connect with others," explains L. Her mother has very limited social engagement now, due in part to wanting to shield her status from friends, as well as simply being more apathetic as a direct result of the disease.

"There are times," says L, "when Facebook, in particular, feels like it could be even more important for her than other 'healthier' people."