Finding the Right Online Support Groups
Being a part of online chronic illness communities, you get to see many facets of humanity. This includes the good and the bad. As an administrator for pages, open and private groups, I’ve seen many different kinds of personalities throughout the cyber ecosystem.
Finding the right support group
The group I will be referring to is pretty large - over 20,000 participants. Sometimes, the size of a group can overwhelm its runners and posts can get lost in the sauce. From my experience, if a poster is aggressive and their comments are on a gross-patient-blaming level, that’s someone who needs to be dealt with. If a person is not dealt with, it’s no longer a group I personally recommend to new patients.
Recently, I was reminded of what can ruin a safe space for people quickly. At one point, I found myself questioning why I was still a member. Over the past year, I had noticed a decline in administrator and moderator participation in the group. This absence allowed for an increase in troll-like behavior from some members. Sometimes you can even see snake oil salespeople pushing their goods as a cure.
A new personality emerged in this specific group and my notifications lit up like a Christmas tree. First, I noticed they were repeatedly posting slanted, leading questions with aggressive language. Calling medications “toxic” is the kind of language that can dissuade newly diagnosed patients from seeking medical treatment.
Next up, their aggressive nature moved into the comment section of other people’s posts. Then, the flood gates opened. I suspected this person was there with some sort of agenda aside from lending or seeking support. Feeling it was safe to assume they had a book or a “cure” to eventually sell, I tried to ignore the posts and comments.
But then it happened. This person said that “All psoriasis patients are fat, overweight, have poor diets, and are to blame for their circumstances because science.” I’m paraphrasing here, but that was the gist.
Choosing online groups
The majority of personalities are there to receive and lend support. But there’s always a small contingent that seems to be there to stir things up. This can be detrimental to those most in need. This is why it is critical for choosing groups with active administrators and moderators.
Here’s what you should look for in an online support group for yourself or a loved one.
- Amount of members in the group including administrators and moderators.
- Entrance screening questions.
- Open group or closed group.
- Type of posts approved to be viewed.
- Responses to posts (helpful, victim-blaming, or pushing unscientifically backed information)
- Assurance that comments between participants remain respectful.
- Correction of misinformation
Groups are meant to be a safe space. I belong to a variety of groups where I am not an administrator or moderator. Participating in other groups helps me see how others operate. Plus, I also have other interests outside of my chronic illnesses.
Values matter for the right support
Dear anyone who needs to hear or see this, psoriasis is not your fault. There are infants and toddlers with psoriasis and it’s not their fault either. An overactive immune system is at fault, not the person belonging to it.
Here at Plaquepsoriasis.com, we have a pretty active psoriasis page on Facebook and a private community for those wishing for anonymity. Well before joining as a writer, the values I mentioned above are what I used to judge this community before joining.
Have online communities impacted the management of your condition? Have you found them helpful or hurtful?
Do you get frustrated with your psoriasis treatment plan?