A good online support community or support group can help you with virtually any health or mental health concern. A good one can give you information about your concern, help you understand your treatment options from a personal perspective, share the latest treatment research and breakthroughs, and most importantly, provide emotional support from others who are going through or have gone through something similar.
However, a bad support community can leave you with a sour taste in your mouth. In the worst case scenario, you could be hurt by a community that wasn’t designed to foster your growth. Or one day when go to visit the community, you might find yourself trying to visit a forum that no longer exists.
I believe in the power of good online support communities to help virtually anyone with a health or mental health concern — as long as you’re opened and willing to engage with others. Best of all — virtually all of them are free and cost nothing to join.
1. Community stability.
How long has the group been online? Does it have a moderation team to help with the daily duties of keeping the community safe and trouble-free?
Is that team a single person that the entire group has to rely on, or is it a group of people, some of which have administrative capabilities?
Is the organization that is hosting the online support group a startup or an organization that has a longer history? (A startup may be gone within a year or two, taking your support with them.) Does the organization fully support the community, or is it just an after-thought with little actual resources devoted to it?
2. Member attitudes.
Are the group’s members welcoming and open? Are there members who are non-judgmental, and seem to provide a helpful word and encouragement in the group?
If the community has more than one support group, look around in some of the other groups of interest to you. Do members seem engaged with one another in mostly positive ways? Are they sharing, caring, and good-natured?
3. Does the group’s size fit your needs?
While a large community may seem overwhelming at first, member numbers don’t tell the whole story. Many communities have large set of users, but a much smaller set of active members — those who check in at least once a week, and reply regularly to other people’s posts. Find a community that fits your needs and comfort level. And don’t be put off if you join a community that’s “too large.” Chances are, you’ll find it more active (and more useful) than a community that has a dozen forums, but only a few hundred members.
4. Do the community’s technical features foster or hinder discussion?
Good online community software should fade into the background immediately and never make you think about how to do basic tasks (such as creating a new post). If it takes more than a minute to figure out how the community works, you probably won’t enjoy the experience in the long-run. Find a community whose software is easy to use and tried-and-true. Nobody wants to be a “beta tester” when they’re talking about serious life and health issues.
5. Does the community have a set of reasonable community guidelines or rules?
Fences make good neighbors, and a good set of basic community guidelines or rules help ensure everybody knows what’s acceptable behavior (and what’s not). Most communities share similar rules, so beware any community that completely lacks this basic foundational building block. Be aware of your community’s specific nuisances in these rules, and feel free to ask questions of the moderation team about them – that’s what they’re there for.
6. Does the community’s privacy options meet your needs?
7. Account deletion & intellectual property policies.
Familiarize yourself with the community’s account deletion policies ahead of time, as many do not allow for the deletion of your contributions to the community unless they’ve specifically said so. It may be technically impossible, for instance, for some communities to be able to remove all of your past posts. Also, some communities “own” your posts once you’ve posted them to the community, while others will hold an irrevocable, in-perpetuity license to your posts. Understand these things before you begin posting, so you will not be surprised if you can’t remove your posts at some point in the future.
8. Does the community offer features important to you?
Some people like online tools that allow them to track their symptoms, treatments, or mood. If this is important to you — and for most people, it should be important — ensure your community offers you some basic tracking tools for things like your mood and symptoms.
Others may find benefit in friends’ lists, photo sharing, or reviews of treatments, services or products. Still others may find the social component of online support groups to be really important, so does it have a chat room or what to chat in real-time with other members?
The key isn’t to say all online support communities should share a common toolset, but that the community you choose to engage in has the tools that are important to you.