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Saturday, April 13, 2024

Dependent on Facebook Groups? Here's How to Break Free

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.

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Discord hosts active conversations around some health conditions, including diabetes, Ehlers-Danlos, celiac, and others. Though originally a platform for gamers, it has grown, in part because of its users, into a more general place for conversation. With more than 140 million active monthly users, many of which skew on the younger side, it seems like someone is always online. It’s hard, though, to find groups for caregivers. If your search for a public server that discusses the health condition you’re interested in comes up empty, check out Disboard and search there.

Health-Focused Social Media

Health-focused social media networks have been around for a while. One such platform is The Mighty. Mike Porath created the site after his daughter was diagnosed with Dup15q syndrome, a chromosomal duplication that can cause poor muscle tone, smaller stature, and cognitive delays, and his son was found, in utero, to be missing at least one organ. Porath says, “Most general platforms provide a forum for people to post, but I don’t think that’s enough when you’re dealing with health issues. We believe real support can be found in the right mix of people, stories, resources, and services.”

Each employee of The Mighty is also a member, many living with conditions such as ulcerative colitis, dysautonomia, or mental illness. Some groups are much more active than others. More than 800 users belong to Fibromyalgia Friends, for instance, but only 10 hang out in the type 1 diabetes group. The site feels friendly and inclusive, with a strictly enforced harassment policy.

Jamie and Ben Heywood started Patients Like Me when their brother Stephen was diagnosed with amyotrophic lateral sclerosis (ALS.) It began as a way to connect ALS patients, but in 2011 it expanded to connect people with a vast array of health challenges. A fascinating feature of Patients Like Me is the easy-to-read graphics the site presents based on data it collects from its more than 830,000 community members. For example, I personally have an autoimmune condition called Sjogren’s, which is characterized by dryness of the mucosal membranes, such as the eyes and mouth. The Sjogren’s page shows common symptoms associated with my condition (I have most of them) and treatments used by community members, along with reported side effects.

With a palette of calming, and slightly boring, blues and grays, Smart Patients is another platform attempting to further the conversation between patients. It was founded by Roni Zieger, an MD and the former chief health strategist at Google, who is now, ironically, Meta’s new head of health strategy. Smart Patients, in addition to facilitating discussion about health conditions, uses data from ClinicalTrials.gov to make it easier for patients to learn about trials. On Smart Patients, you follow a particular topic (like type 1 diabetes), and your homepage feed populates with the most recent discussions on that topic. Like other similar sites, its type 1 community isn’t exactly bustling, but the topics of kidney cancer and Sjogren’s syndrome seem active. One user says of Facebook versus Smart Patients “my hubby detests FB and does not like me posting anything about him or his journey … SP is my place for info and support.”

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Inspire.com, with the tagline “finding hope through community,” claims more than 2 million members, with over 250 condition-specific support groups. Brian Loew, the company’s CEO, says, “Inspire’s communities are managed 24/7 by a team of full-time professional community moderators with deep experience working in the medical field. Our moderators offer fast and direct support to members who need help.” When I searched Inspire for type 1 diabetes communities I found one community dedicated to the disease, with the most recent post slightly more than two months old. Loew says the most active communities on Inspire are Lung Cancer Survivors and the Ovarian Cancer Community, among others.

Disease-Specific Sites and Apps

Many sites focus on one medical condition and host forums in which users can discuss topics relevant to their health concerns. For example, the Juvenile Diabetes Research Foundation (JDRF) has a community message board called TypeOneNation that can be a comfort and a source of peer-suggested ideas for managing diabetes.

MyLeukemiaTeam is, as the name implies, focused on leukemia-related issues and includes features like an Activity Page on which members can post updates, including daily “triumphs and trials.” The site also allows users to “Find People Like You” and sort through a Q&A section.

People living with multiple sclerosis may benefit from visiting MSWorld, which offers a community forum full of relevant topics, including a Secret and Confidential Symptom Room to discuss more delicate issues related to MS.

SCD Companion bills itself as a free app (sponsored by pharmaceutical company Novartis) that offers people with sickle cell disease a place to share their experiences and comment on others’ sickle cell-related concerns. It functions as a social media app, with a feed where you can comment on other posts or put up your own, including photos and videos.

Therapeer exists in the mental health space and focuses on gathering users into support rooms to help community members in need with diseases from OCD to bipolar disorder. For participation, you earn Kudos, which you can then put toward hosting your own Support Room. If you don’t want to wait to earn enough Kudos to start your own room, you can pay $5 to start one immediately.

While we can’t list every app for every medical condition, a quick App Store or Google Play Store search should help you find services that discuss the condition you need support and information about.

Whatever Facebook alternatives exist, with nearly three-quarters of Americans obtaining health-related information from the internet it’s clear that online, disease-centered peer support is necessary. The ability to interact with other patients and caregivers can feel like the difference between stumbling around in the dark and entering a room with the lights on.


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