• Jay Trisko

The Unexpected Health Benefits of Social Media

Those supportive DMs and niche Facebook groups can have a positive impact on your well-being.

Jenni Gritters https://elemental.medium.com/the-unexpected-health-benefits-of-social-media-e345032668b9

In 2016, 39-year-old Arizona resident Laura Willard became ill, but nobody could figure out what was wrong with her. She gasped for air after walking up the stairs, had serious heart issues, and half of her face drooped. Her eyes were red, her muscles twitched nonstop, and all of her joints were swollen and painful. At one point, Willard could barely swallow food.

Dozens of doctors reviewed her case and came up with nothing. As her symptoms progressed, Willard started to do her own online research. It was, she says, a matter of life or death. Eventually, when her ear turned bright red and swelled up, she discovered a posting online about a disease called relapsing polychondritis, which causes your body to attack anything with cartilage in it.

Willard thought she might have this rare disease, so she reached out to more doctors, several of whom agreed that she’d found the right diagnosis. Around the same time, Willard also came across the relapsing polychondritis Facebook group, a community with hundreds of people from around the world suffering from the same thing.

“People in the group, who have since become my real friends, encouraged me not to give up,” she says. “They reassured me that I wasn’t crazy.”

Willard says the Facebook group turned her experience around by giving her social support and new information. These people got it; they knew her experience personally because they were living it, too. “Having a rare disease that my doctors do not even understand is the most isolating feeling I have ever experienced in my 39 years of life,” Willard says. “I cannot ever entertain the idea of leaving Facebook because I could never lose this group. It is a true lifeline for me.”

Social media is known to be related to a bevy of negative outcomes, like rising depression, over-comparison, social anxiety, and perceived isolation. But experts and studies also show that there is a positive benefit that comes from using social media on a daily basis, and that’s social support.

“Social media is one of those things with a lot of pros and cons,” says John Naslund, PhD, an instructor in global health and social medicine at Harvard Medical School. “We see the disadvantages highlighted more often, but I think it’s mixed.”

Naslund studies the ways in which technology could help improve people’s mental and physical health, and he says social support is a huge part of this research. Social support (online or in person) is generally defined as “the various types of support (assistance/help) that people receive from others.” It can include emotional support, like the things people do to make others feel loved and cared for, which in turn bolsters a sense of self-worth. Or it can be instrumental, which refers to giving tangible help like childcare or housekeeping or even money.

A large body of research has shown that in-person social support may be one of the most vital pieces of a satisfying human experience: Proper support improves physical health and it can make people feel more optimistic in the face of trauma by encouraging coping and reducing distress. Social support helps people define who they are in the world as they age, and it can hold people up during difficult illnesses and experiences. One study even found that social support can combat the negative effects of discrimination.

Before the internet, social support often took the form of neighbors helping neighbors; even if someone couldn’t understand your unique experience, they could still help bring you meals, babysit your children, or listen to you talk.

But in recent decades, social media platforms like Facebook, Twitter, Instagram, and YouTube have provided people with ways to link up with others who understand their very specific experiences, whether that’s an illness or a life event — no matter their location. “Any support offers benefits, but it’s more meaningful when it comes from someone who knows what it’s like,” Naslund says.

“Having friends — yes, the ones who live in the computer — who understand exactly what [I am] going through at any given time is a gift.”

Online social support takes many forms: connecting to others via private or open Facebook groups, or following trends on Instagram or Twitter via popular hashtags like #lymewarrior or #breastcancer. You may even experience social support via comments from friends or strangers on your Instagram posts or through DMs from people you know (or people who’ve come across you via hashtags).

“The internet affords us the opportunity to ‘find our people,’ because all of a sudden the perceived group size of our minority group is much larger,” says Danielle Wagstaff, a psychology professor at Federation University Australia.

Preliminary research has found that online social support appears to offer many of the same benefits as in-person social support, like reduced levels of distress and loneliness, improved physical health and optimism, and identity-building. In 2016, Naslund published a paper about the benefits of social media while living with serious mental illness. He found that despite a small risk of misinformation, online connections seemed to be positive overall:

They facilitated social connections, which helped people with mental illness better manage their symptoms.

“Online, we can self-disclose and we can do it in a controlled way,” he says. “A lot of mental illnesses come with social isolation… so connecting with someone who has a shared experience on social media can reduce stigma.” In other words, connecting online puts you in charge of the way you tell your story. By sharing your story with other people and hearing they’re going through similar things, there may be less shame associated with what you’re experiencing.

Meagan Harrison, a 29-year-old from Baltimore, was the first person to find her friend after her friend died by suicide. She turned to the internet, specifically forums and Instagram accounts, hoping to uncover stories from others who’d gone through something similar. “[There’s] the fear that people can’t fully relate to me, know me, or love me, because of this experience. So, having the support of an online group or even support in having the peripheral knowledge that my experience is not defining me, and that I can be resilient and move forward wholly, can be really encouraging.”

Online social support also offers the benefit of information-sharing and education. In one 2015 study, researchers found that Twitter was an effective tool for helping breast cancer patients find more and better information about their condition than if they sought in-person support. Many of the 200-plus women in the study reported lowered anxiety and said they felt empowered to seek a second opinion after the study was over.

Yael Langer, a 30-year-old Boston resident, donated a kidney to her father four years ago. A year after the donation, she joined a kidney donor support group on Facebook because she wanted to learn more about what to expect over the long term.

“People post and share very vulnerable questions and thoughts,” she says, “like their fears about surgery, issues with their recipients, health issues post-surgery, and what it feels like when the person who has your kidney needs a new transplant or dies and takes a part of your body with them. It feels like such a supportive, kind, and safe space.”

Kaye Harberd, a 41-year-old from Montana, agrees with Langer. She has a son with a rare eye condition called retinitis pigmentosa. After her son’s diagnosis, she joined several Facebook groups for parents of children with this condition. Her online community has given her a sense of hope, she says, as well as a place to admit when she’s struggling or feeling alone.

“On a personal level, the groups provide a place for me to be raw, to ask questions, to ask for help, to be vulnerable,” she says. “It is strange… I don’t know these people personally of course, but I can think of a handful of people I have met over social media that I could call and ask questions or call just to cry.” Like the women in the breast cancer study, Harberd says having more information makes her feel less anxious.

Still, getting online support and information from people you don’t know can be dicey. Harberd says she has left several Facebook groups because there were a lot of trolls.

Langer says the moderators in the kidney transplant group are careful to prevent the spread of misinformation, so one of the rules is that you can’t ask or answer questions about medications. And Willard says she’s careful to do her own research about what she’s been told.

What are the factors that constitute a good online support network? Is a good group big or small? Is it moderated by one person or a group of people? What kind of information is shared and how do people connect? And is one platform better than another? All of those questions will likely be subject to scientific investigation in the coming years, Naslund says.

Naslund also believes people should try to embrace social media as a tool with positive potential; he hopes researchers will continue to look at how social media platforms can support connection, education, and improved mental health — no matter what unique situation someone might be dealing with.

“Having friends — yes, the ones who live in the computer — who understand exactly what [I am] going through at any given time is a gift,” Willard says. “To be able to hop into the group and say, ‘Hi friends! So I woke up with my eyes swollen shut today and I’m wondering who else has had this happen, do you know what could cause it, and what did you do for it?’ is incredible.”

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