I’m part of a FB group that supports women born with a congenital disease that prevents conception. I’ve noticed that a lot of women in the group, though their intentions are good, are very negative and discouraging. Everyone talks so much about trying to be strong but they seem to do nothing to actually feel good about themselves. They just wallow in self-pity like the world owes them. And there seems to be a lot of people who seem to think it’s perfectly ok to blackball other women in their life because they fall pregnant.
Every time I read one of the posts, the comments are so pitiful it upsets me.
Am I crazy to think this kind of environment is probably causing more damage to these women than good?
While there are many positive qualities of support groups, they are not without their problems. This is especially true regarding online support groups.
The benefits of online support groups include finding comfort in knowing that you’re not alone in experiencing a particular problem. It can be good to connect with other people who understand what you’re going through.
Online support groups may also provide education and insight into your own situation. You might learn something that could lead to new ideas and treatments.
It’s always good to have a supportive network of people in your life, even if only online. People who have good support networks don’t feel alone, and overall have more positive experiences in life.
Alternatively, there are drawbacks with online support groups. Unmoderated, some of the group members can devolve into negativity. It is easy to be nasty or offensive to persons with whom you have no chance of having personal contact. Ideally, it would be best if it were supervised by professionals but when it comes to Facebook and other social media sites, that’s not likely to occur. Joining a moderated group with clear-cut guidelines about behavior might help to improve the online support group experience.
In addition, unmoderated groups may be apt to share misinformation. The feedback of group members may be anecdotal in nature and thus not based on sound scientific principles. Some information can even be harmful.
For instance, NBC recently reported a story about parents of autistic kids sharing misinformation in private Facebook groups. Some of these groups were small, with as few as 10 members, but some were large, with thousands of members.
They discovered that some parents used dangerous methods to “heal” their children with autism, a disorder that currently has no cure. These included utilizing chlorine dioxide (orally or via an enema, or in baths). The Food and Drug Administration (FDA), indicates that chlorine dioxide is essentially bleach and using such treatments can cause permanent harm to the child, even death. Some parents even posted pictures of themselves forcing their children to ingest chlorine dioxide. It appears that some people were so desperate to help their children that there were willing to engage in harmful and potentially disastrous behavior.
It’s not uncommon for people to have experiences like what you’ve described in the online environment. If the group were better moderated, or moderated it all, there would likely be rules about complaining or otherwise creating an atmosphere in which negativity could prosper.
To answer your question directly, you are not “crazy” to think that the support group is causing more harm than good. It certainly seems to be. Unfortunately, there’s probably little you can do to change the dynamics of the group. It may be best to avoid it. Thank you for your question. Best of luck to you.
Dr. Kristina Randle
