I've been reading a lot of articles about how Facebook is bad for my mental health. The online magazine, Slate ran one titled, "The Anti-Social Network," which said that "by helping other people look happy, Facebook is making us sad."
In her article at Psychology Today, "How to Quit Facebook," Jen Kim said: "The site is filled only with perpetually happy status updates, accomplishments, joyful puppy and baby pictures as well as expertly cropped photos—all of which exude an ostensible super-happiness that is clearly impossible to sustain."
In another Psychology Today piece, "Social Media Makes Me Feel Bad About Myself," Jennifer Garam said: "On Facebook and Twitter, everything is always wonderful for everyone and all their lives are amazing."
I'm not questioning or disputing these writers' personal experiences on Facebook. I'm just here to say: This is not my Facebook. My Facebook is not filled with happy status updates, expertly cropped photos, or people for whom everything is always wonderful.
I suffer from chronic pain and illness, and my Facebook is filled with status updates that reflect the reality of day-to-day life for people whose experience is similar to mine: "pain unbearable today"; "sad because had to cancel plans with friends"; "worried my family doesn't understand how disabled I am."
I've written about how those with chronic pain and illness live in an invisible world ("The Challenges of Living with Invisible Pain or Illness"). After reading a half-dozen articles on the harmful effects of Facebook, I've concluded that those with chronic pain and illness live in an invisible Facebook world as well!
What's our Facebook world like?
First, many of us join what used to be called "Fan Pages." Most people think of these Pages as commercial ventures, created by someone to sell a product or a service. But those aren't the Pages that matter on my Facebook. We join Pages that are sponsored by non-profit national associations related to our particular condition, such as The CFIDS Association of America, the S.L.E. Lupus Foundation, the National Fibromyalgia Association, the National Cancer Institute. By doing so, we get the latest information about research and treatments right in our Facebook News Feeds. This is important because most of these stories go unreported in the national media—online or print.
Second, many Pages that were set up with a commercial goal in mind transform into supportive communities. In 2010, a few months before my first book, How to Be Sick, was released, I followed the advice in an article about marketing a book online and started a Facebook Page for the book. According to this article, the idea was to create a fan base so that when the book was released, I'd have ready buyers.
That was then. Now (one book later), my Page is not about selling either of my books. It has become a community where people "meet," often seeking others' advice and support by posting about the difficulties they face due to their health challenges. The wisdom that gets shared on that Page astounds me at times. Quite often, I'm the one learning from the posts and comments! To make it a welcome home for others, I post photos of paintings and animals and other assorted "wonders of the world" to help us all get through the day and night with as much grace and joy as possible.
Third, many of us join Facebook Groups with members who share the same diagnoses or health issues. Unlike Pages, Groups are often private. People ask to join or are invited by one or more administrators. In my opinion, the Internet's hidden treasure for those suffering from chronic pain and illness are these Facebook Groups.
When a Group is private, none of the members' posts show up in their News Feeds. This means that people can share their difficulties or ask questions of others in the Group without their Facebook friends seeing the posts. This provides a safe haven for people to share the difficulties they're facing, difficulties that are either directly related to their medical condition or are the result of "collateral damage" (financial problems, relationship stressors). A few members always seem to be online to respond immediately. The administrators make sure that the tone of the Group remains helpful; they can ban people who post inappropriate content or harass other members.
There are thousands of health-related Groups on Facebook, with members from all over the world. All a person need do is enter the name of his or her condition into the Facebook search box and the names of relevant Groups will pop up. Many people have told me that these Groups brought them out of the painful isolation they'd been forced into due to their medical problems. I continually see people lifted up by others in the most constructive and moving ways. My guess is that the world of the healthy has no idea that these support Groups exist.
Because chronic pain and illness know no national borders or cultural, ethnic, or religious background, Facebook is also a place to learn about people who aren't like you. After I posted an article about the many holidays one can celebrate in December, a member of my Page who's from England commented that social networking sites like Facebook have made it more likely for people to have multi-cultural friendships. He said that after reading my piece, he immediately looked up Kwanzaa on Wikipedia! As he so simply but eloquently expressed it, "This has all got to be a good thing."
I realize there are legitimate concerns about Facebook, particularly its unsupervised use by teens and pre-teens. But let's not paint with too broad a brush, because my Facebook is a port in the storm—a place I know I can go where, instead of being told that life is always wonderful and amazing, I can find that, like me, others are struggling, while trying to make peace with the hand they've been dealt in life. To quote another person who posted on my Page: "Without this forum and companionship during difficult times with ill health, our minds would have been trapped without dreams and our spirits without song."
© 2012 Toni Bernhard. Thank you for reading my work. I'm the author of three books:
How to Live Well with Chronic Pain and Illness: A Mindful Guide (Fall 2015)
Visit www.tonibernhard.com for more information.