In my time with online support groups and Autoimmune / Chronic Illness groups I have had many different types of experiences, and they can be as different as the people themselves. They can range from the truly inspiring to the truly horrific, which reminds me why there are so many different groups out there in the first place.
I have seen some patterns of behavior repeat itself in some groups that I think should form part of the ‘survival guide’ for hosts and admins to be on the alert, especially if they themselves engage in these behaviors too.
The Invisible Hierarchy: I am starting with a very difficult and sad observation of some groups who are committed to the idea that their particular disease / illness is more significant, worse or more glamorous than any others. Members have become quite ‘snobbish’ in their attitudes and beliefs, and struggle with the idea that there are many other illnesses and diseases out there that are just as challenging. Members insulate themselves and are reluctant to accept or acknowledge other illnesses are just as valid as theirs. I found this especially true of Autoimmune diseases where there are over 80 different and recognized ‘branches’ which can range in symptoms and treatment, however all of them are incurable and all life affecting. Many people have more than one Autoimmune disease and many different autoimmune diseases have overlapping symptoms which makes them almost impossible to separate and differentiate. In my book there are NO special ones. No glamorous ones or more desirable ones. Pain is pain. Hurt is hurt. Struggle is struggle. Humanity is humanity. For all those that believe that their disease is more special than someone else’s and entitles them to feel superior over others I say “good luck with that…” and I quickly find the exit door.
Competitions: It is human nature to compete, and while that might be an advantage on the race track, it is very counterproductive in support groups. When people start posting about how they are worse off or are suffering more than someone else they will lose all sense of empathy and start seeing everything as a competition for attention. Most people who have come to these groups have done so because they are in pain and hurting. Its not a competition. Pain is pain. Suffering is suffering. Don’t let it be a competition and don’t engage in competitive behaviors. Ever.
Teachers Pet: It is quite surprising how often there are people who will try to gain validation by always agreeing with the admin team or pay constant compliments to them, to the point of never disagreeing. This can start breaking people up and causing people not to express their own thoughts and beliefs for fear of being singled out. I don’t believe this is helpful and is counterproductive to why people are joining such groups in the first place. We want to be heard. We want to share and not be judged. We want to learn and witness the diversity of experiences. Teachers Pet Behavior only benefits 2 people, the Teacher and the Pet, and overlooks everyone else in the group.
Pack Behavior: Sometimes support groups can turn into a team sport with people breaking off into cliches and tag teaming each other whenever someone posts something that one of the ‘team’ may disagree with. Pack behavior requires that the pack hunt together, agree together and never, ever stray from the pack members. I will leave such groups as quickly as I can because its not a place where I can feel welcome and free to speak my mind. I can’t imagine how anyone else would enjoy that type of group either, but each to their own.
Positivity overload: There have been a few groups that are simply bursting with positive memes and requires everyone to embrace the smiley icon and never say a thing that might be perceived as negative. I am sorry, but I am a normal human being who has a whole range of emotions and while I admit that illness has helped me cherish and value things very differently, I still have moments of pain and sadness that is a product of living with life long illness and progressive diseases. I want to be able to speak about my emotions in an honest and open way without worrying that I am going to be labelled as not positive enough. If I want to see a picture of a sunset and smiley faces the internet is awash with them. There is an old saying that “… if you have to be happy ALL the time, you will ALWAYS be unhappy…” I believe there is something ‘life affirming’ in the acceptance that life isn’t always fair and it isn’t always going to be happy. Positivity and Gratitude are two very, very different concepts.
Negativity overload: You can usually spot these groups within an instant and they are quite literally a pity party or a vent-athon. I am the first to agree that life isn’t all bells and whistles. In fact the only bells and whistles I usually hear these days are the ones from an MRI machines, however, it isn’t all doom and gloom either. I like a bit of balance in my support groups. Some posts that feel free to share both good and bad. Like an emotional buffet. One day I might feel like there is a target drawn on my back, and the next day I might feel like I am the luckiest woman alive. My heart genuinely aches for those people who are experiencing rough days and flares that make a torture chamber seem like a day in the park, but I offer my empathy, my sincerity and my understanding. Autoimmune diseases can really be the ultimate mixture and range of emotions. Some days its agonizingly unpredictable and other times it a 24/7 battle of excruciating pain and suffering. Some days are wonderful and joyful where you are the most grateful person alive. Venting is needed and necessary sometimes, but it cant be the only way to interact with your peers.
We all step into a group with different experiences, different disease activity, different prognosis, different circumstances, different support networks and different coping skills, but usually we there because we want to find a place to be respected, not judged, safe and to learn from each other. We don’t want to be alone in this world and isolated any more than we have been, so we keep searching to find groups and places where we ‘fit’ and where we feel ‘valued’. The best groups know this. The better groups strive to make this the experiences that all their members can share in.