Let's Talk About It: Observations of Support Groups

"Join the club!" Does this phrase make you laugh or cringe? Do you dress to blend in, and hope no one notices you? Or do you like for everyone's head to turn when you enter a room? Do you hang back and wait to get a feel for the room, or do you set the tone?

I kind of think of myself as not being a "joiner." That is to say, I never really got into school clubs, even though I was in speech and theater, and I was never into sports, even though I was a cheerleader. And I am not one to leap into support groups - in person or online - even though I belong to so many that it's difficult to keep track of them all. I think it's important to belong to support groups as a hidradenitis suppurativa patient, but there are various intricacies of navigating them. I hope that sharing my experiences and insights will help you be more comfortable if you join an HS support group.

"I'm new here!"

I can always tell when someone is a brand new member to a support group, even without the tell-tale, "I'm new here!" They will unfailingly ask questions that everyone else has asked before, many times! My guess is these members must be extra nervous because those of us who have been here a minute jump in right away and post about 50 messages replies to their comments.

One of the best tips I can give new members is to read through the posts when you join a group. You will likely find answers to a lot of your initial questions. The second best tip I can give is to be aware that certain platform algorithms no longer list posts in date order. So, you can search using keywords to try to narrow the results if you are looking for a specific topic.

Speaking practically

Often, there are members who post daily. Sometimes they need emotional advice, or are seeking support or affirmations. I am the opposite in that I don't often look for advice from others or look to others to lift me up.

Then what am I doing in a support group, you ask? Well, support comes in many forms. Sometimes it is better if other members of the group interact with those posters, and I save my conversations for topics I am more comfortable speaking about. My area of knowledge lands in practical resources. So, if it seems someone could benefit from that sort of information, I will jump in.

Battling the algorithms

As a general rule, I try to reply to posts that no one else has commented on, that have been sort of orphaned. That happens sometimes. Someone will post and, for hours, no one will answer. I blame this partly on some algorithms that show the most popular posts rather than showing them in order of the date on which they were posted. Posts may appear to people only if more people respond.

I sometimes truly dislike it if I post a question or dilemma and no one responds, or they take days to respond. So, I try to extend consideration to anyone who has taken the time to ask for help. If I feel I have something of value to contribute, I reply.

Do it your way

I hope these tips and insights help you overcome the reluctance to join a group or help you find your place in a group you have already joined. You too can navigate your own path in support groups so that you can give and receive support in ways that are most comfortable for you.