I’m sitting on the couch late at night, scared and scrolling through my Facebook group that focuses on type 1 diabetes. I’m looking for advice on why my teenage son might be experiencing extremely high blood sugar. I receive replies within minutes: The site where his insulin pump enters his body could be infected, or it may be sickness or allergies.
In this group, and other similar Facebook groups I belong to, people ask for extra vials of insulin, a spare continuous glucose monitor, supplies that will help their children survive until morning and beyond. I don’t know what I would do without these circles that I go to daily for input from more experienced parents of kids with type 1 diabetes, and, occasionally, simply to express sadness that my son has to struggle with this disease.
Complicating my reliance on Facebook groups is the unfortunate fact that I, like many others, have serious issues with Facebook, Meta, and Mark Zuckerberg. I dislike that they have allowed disinformation to flourish, that they grind down the mental health of teen girls, that they “sell” our data. But I need their massive platform of 2 billion users because with a base that large chances are good that I can find someone at 11 pm on a Monday who can offer useful advice or just calm me down.
Amelia Ford, a Seattle mom, regularly visits the Facebook groups POTSibilities Parents (for parents of kids with postural orthostatic tachycardia syndrome) and Autism Inclusivity to gather insight from others who have kids with the same conditions. “Before I found these groups, I often felt like I didn’t know what to ask health care providers when I had them in person. I would leave the office with a ton of new information but not a true understanding of what was going on, what to expect with a new medication or protocol, when to call them, what else we might explore.”
Similarly, Jeanne Mazza from Wayne, New Jersey, relies heavily on a Facebook group for parents of children with Pitt-Hopkins syndrome, a rare genetic condition. “It was life-changing to be able to relate to other parents with children that have the same syndrome as my son.”
With stakes so high, how can Amelia, Jeanne, and I break free of Facebook groups and find similar support elsewhere online, preferably somewhere without the social issues Facebook exacerbates? Media psychologist Pamela Rutledge says when looking for a digitally based health group, “it is important to note if there is a moderator, and their qualifications, whether the members and comments are supportive or directive, and if the group feels empathetic and contributes to your problem-solving.”
It’s critical to remember that while peer-to-peer health groups can help bridge a gap between our individual, lived experience and what happens in a doctor’s office, such groups are not replacements for consulting with medical professionals. You should check with your doctor when you read feedback that seems off and corroborate what you hear with reliable sources.
Other Popular Platforms
With more than 430 million active users, Reddit can be helpful for health conversations. Many subreddits have one or more volunteer moderators who can run their communities as they see fit as long as they stay within Reddit’s Content Policy and Moderator Guidelines. The Type 1 Diabetes subreddit comes the closest of any social media groups I’ve found to providing Facebook’s immediacy and breadth. The conversation is fairly robust, with several legitimate posts per day, each with at least 5-10 comments. Still, because many users post under anonymous names and use avatars instead of profile photos, it lacks the personal touch of Facebook.
I sometimes head to Quora to ask questions. The people who answer are often experts in their fields and have relevant experience; other times they are only “’splainers” with very little to contribute, but that’s no different from Facebook. Quora, like Reddit, also has an upvote and downvote feature, which affects what you’ll see in your main feed. If you’re looking for straight answers more than sustained community, this can be an option you might want to explore.
