In today’s social media focused society, there’s an abundance of support options available to chronically ill patients. We used to have to hope someone around us had the same disease, or that a generic support group would meet locally and the meeting would fit our schedules. If we were sick or experiencing a flare, the meeting wasn’t an option and then we sometimes had to wait another month for the next one.
Today there are thousands of support groups online. Platforms like Facebook and Reddit make it easy to connect with others worldwide. Even better, the groups are disease specific!
One of the loudly unfortunate traits of social media, however, is anonymity. While this can be a great thing, it also tends to give folks the idea they are not interacting with a human being on the other side of the screen. Debates, arguments, name calling and drama can often become pervasive in these groups. I know I’ve left many over the years because of drama, and more importantly incorrect medical information being shared.
I was fortunate to find the best support group on Facebook. It was founded by a remarkable woman who has also served as a medical editor for the National Adrenal Disease Foundation. Through many years of research and many less-than-ideal experiences in other groups, she built one which relies solely on medically focused conversation. No memes. No birthday celebrations. No “venting.”
People get answers quickly. No support group can ever take the place of medical advice, nor should they. We should all join them with the understanding that nobody is a doctor, and when we share research and experiences, they’re just that. But sifting through so much information can be tricky when you’re also worried about someone getting angry or sharing incorrect information.
I came into the group years later, but I’ve seen the results of hard work from administrators over the years. Another group of patient leaders asked the other day, “What is the point of support groups if it’s all drama?” It got me to thinking how important it is to have these conversations.
How do we build a strong, medically relevant support group? Here’s what I’ve learned.
Set up clear and strong rules from the beginning. It’s easier to relax rules than to tighten them down the road.
Refuse to allow the drama to enter. While the group is forming, using the post approval option to weed out the drama is an easy enough option. As the group grows, and that becomes unreasonable, select more administrators and moderators. Be sure that posts which violate group rules aren’t allowed to linger.
Control the narrative. It’s very much worth the time to create files which use medically sound resources. Doing this allows you to compile the most important information on your disease in one easy to find location. It also ensures the information the support group shares comes from vetted sources, such as NCBI, Mayo, Cleveland Clinic, Johns Hopkins etc. as opposed to something which hasn’t been medically verified.
Discourage irrelevant posts. If your focus is adrenal insufficiency, posts about other illnesses may not be relevant. Though often co-morbidities can exacerbate a condition, be sensitive to your members’ needs, but also aware of how a thread is going. Be prepared to step in.
Build a solid team. No man is an island and that’s even more pertinent in the support group world. One person cannot manage a group of more than a few hundred people without help. Finding people who are knowledgeable, compassionate, and strong leaders is essential to group function and your own sanity! The bigger the group, the larger the team you’ll need!
Create a series of questions for potential new members. It’s an excellent way to detect “trolls” and to protect the online safety of your members. This is your first impression as well, and the way the questions are answered can offer a clue as to what kind of interactions this potential member will have in your group.
Remember your purpose. If you’ve created a support group, it’s because you wanted one to suit your needs. Stay true to your original vision. It’s OK to modify and evolve, but remember your original purpose is the heart of the group.
Encourage people to support their claims with medically relevant evidence as opposed to simply opinion. Never be afraid to just instruct them to call their doctor. No matter how much research we read, we cannot replace medical care, only supplement it.
Be aware of your administrative tools. Someone causing trouble? You can put an individual on post approval and even mute them temporarily! This is an excellent way to remind people that they must follow group rules, but their health is still very relevant. Problem not solved? Eh, you’re not their doctor, and a support group is just that. A group for support. If someone can’t be supportive, let them go. Nobody has spoons for drama!