Online support groups can be a great source of emotional support and valuable health information you won’t find on any website from the National Institute of Mental Health or others. Some people are a little leery of joining an online support group, however. Others don’t quite understand what benefit they may gain from joining one. Still others understand a support group’s benefits, but feel like they still don’t gain as much from joining one as they had hoped.
Your experience in an online support group will inevitably vary. But these tips may help you get the most from your experience, and keep your expectations in check.
1. Take what you need, leave the rest.
Many people come into an online support group with their story, asking a specific question about treatment or other people’s experiences. Some people may reply with experiences of their own, or advice about what the “best” treatment is for a given condition. This is how online support groups work.
But some people may not agree with the advice given, and that’s perfectly okay. We’re a diverse culture living in a diverse world and we will not always agree. Some people spend a lot of time arguing about opinions or things that are secondary to why they joined the support group in the first place. Take the advice that makes sense to you, and leave the rest alone.
2. Stay somewhat anonymous.
This may not seem like the most obvious advice — after all, self-help support groups have a large social component. How are people supposed to get to know you if you remain anonymous, sharing little of your person life with others?
Staying somewhat anonymous doesn’t mean you don’t share — but pick and choose which information you share. Remember that potential future employers, insurance companies, etc. can easily tie online information you share in an online support group to your identity if you let them. There are already documented cases of people being denied coverage for life insurance based upon what they share online, and people not getting a job for the same reason.
The key is to share the important stuff — your feelings, how doctors are treating you, what treatments are recommended, how your family is supporting you, etc. — and leave the unimportant stuff out (like where, exactly, you live; your exact age; anything that would be readily personally identifying).
3. Set your expectations.
An online support group isn’t going to magically cure your concern. Nor will you find it full only of caring, supportive individuals. Support groups mimic the diversity of the real world, meaning they will be full of people from all walks of life and often from very different backgrounds. Don’t assume that others experience things the same way you do — chances are they don’t.
Online support groups are best used as adjunct to some other kind of treatment. In mental health, that means that for most people, they should also be in psychotherapy or taking a psychiatric medication. You can also use a support group to test the waters to see if treatment is needed in your case.
As an addition to other treatment, an online support group is best used primarily for social and emotional support, and for exchanging information about treatments. People need such support when facing life-threatening health concerns or ongoing mental health concerns. It helps an individual feel like they are not alone.
4. Be respectful of other people.
This seems like a no-brainer, but I still see people snipe and be mean to one another in an online support group setting every day. Don’t put down or disparage other people’s experiences, advice or opinions. You can disagree with someone without making it personal. You can disagree with someone respectfully, too. It just sometimes takes us a moment to take a step back, catch our breath, and try and gain some perspective before responding.
For instance, it’s okay to correct misinformation you come across it in a support group online. But there’s a big difference between, “I can’t believe you posted that everyone who has had ECT has had zero side effects! That’s just a lie” and “From what I’ve read about ECT treatments, it seems that most people experience some memory loss, but it varies from person to person.”
5. Respond mindfully.
If people responded more mindfully in support groups online, I suspect people would generally get more out of them. Being mindful simply means taking a moment to stop, think about exactly what it is you’re feeling and thinking, acknowledge such feelings and thoughts, and then proceed with an appreciation for those thoughts and feelings. It’s a great way to stop anger in its tracks, and also a great way to focus on a person’s emotional message, rather than the technical specifics of a particular support group posting.
I look at mindfulness as a way of appreciating both the forest and the trees.
6. Don’t believe everything you read.
Related to #1 about taking what you need and leaving the rest, you shouldn’t believe everything you read in an online support group. While it’s been my experience that most people don’t relay misinformation nearly as much as professionals fear, it still happens once in awhile. When it does happen, it’s usually corrected by another group member in the same conversation thread.
But sometimes the misinformation comes in the form of an opinion, and therefore there may not be as easily recognized or corrected. When in doubt, check it out — Google is always just a click away.
7. Support groups aren’t for everyone.
Some people will try all of these tips when joining a support group and still don’t “get it” after giving it a try. Don’t be worried — support groups aren’t for everyone. Some people just don’t get much emotional support or feel “supported” in such groups. Some people view it as just a place to complain and don’t see how people are also trying to break out of old, unhealthy patterns. They aren’t right for everyone.
Support groups work best when you come into one with an understanding that different people are there for different reasons. Some will be more supportive than others, and that will come out in what they say or how they respond to you. That’s not a reflection on you, that’s a reflection on the diversity of people and their differing needs.
Online support groups have helped millions of people online for the past two decades. I hope these tips help you enjoy one today.
Need to find a support group online?Psych Central hosts two online communities, comprising over 150 support groups — The Forums at Psych Central cover all mental health concerns, while our NeuroTalk community address neurological and brain concerns.