Why I Am Wary of Online Support Groups

The thing I most like about The Mighty is that it is a sharing of experiences, hopes and what we have learned along the way. But beware, not all online “support groups” are like this!

Over the last two and half years I have joined about five different types of support groups for diabetes and for various dietary approaches. A couple of these were Facebook groups, others worked on different platforms.

There is lots of information and expertise available in these groups that can be and was very helpful. But this comes at a cost. Despite the hard work of administrators, things can go wrong. I joined most of these just after my chronic illness was diagnosed. I was absolutely desperate for support and understanding. But this isn’t what happened!

 

From my experiences I have decided that the negatives are greater than the positives. I don’t think I will ever join a support group again. I have become very wary.

Chronic illness can often bring depression and certainly there is some grief and sadness when you are first diagnosed. This means you are much more emotionally vulnerable and can be deeply affected by thoughtless remarks. Groups that are open have every sort of person in them from the kind and compassionate listeners to the just plain nasty, egocentric and vicious person. You can be damaged. This happens in closed groups too.

Because people are not communicating with people they actually know, and it isn’t face to face, respondents take liberties. There seems to be a perceived freedom to be rude and discourteous. I have seen these so-called “supportive” group members telling a person they are an “idiot” or a “fool” or you get a “WTF” response. How is denigrating someone being supportive?

When I joined these groups I was seeking help, support, knowledge and encouragement. In one of them, for diabetes, I learned a great deal from some longer-term and older members. It was quite a happy and positive experience. I was new to diabetes and this was a good way to build my understanding. Then out of the blue came a nasty message. Afterwards the person apologized because they sent it to me and it was meant for someone else! Well, it shouldn’t have been sent to anyone! This sent me into a tailspin. Was the support worth the possibility of someone else sending me a vile accusation in an email message? No, it wasn’t.

You actually need to be emotionally strong and resilient to belong to some of these groups. I got lectured about using a microwave in another group! Well, I come from a science background. I understand how microwaves work and in fact they provide better nutritional outcomes than boiling food. Everyone is entitled to an opinion but, because I am just an unknown on Facebook, I can get a diatribe spewed at me. I know I can report it but the damage has already been done. Do I want to read through such opinion and sarcasm? No, I don’t. Does it make me feel down? Yes, it does!

I have diabetes and was told in a ketogenic group that it’s not OK to consume sugar despite you a having a hypo! This is totally ignorant. So sometimes, the comments border on irresponsible. During a hypo, which can occur out of the blue, I do need glucose. People in these groups comment as if they are the fount of all knowledge and this can be damn dangerous.

I believe it is wrong to give advice to people and even worse to do so to people whom you do not know. These “support groups” seem to attract people who see themselves as “experts” and guardians of the “one true way.” They do not tolerate deviation and the comments can cause your confidence in your own understanding of your illness and how your own body works to plummet. I actually have enough on my plate to deal with so I don’t need the negativity that has been sent my way.

Cyberbullying is prevalent on the internet. Being connected to people you don’t really know is really quite superficial. The bullies can operate anonymously. It allows inhibitions and the normal social protocols to be abandoned. This sort of bullying or harassment behavior can have drastic effects on me.

Then there’s the judgement that comes from the experts in the group. Being judged leaves me feeling like I am not worthy, not good enough. I don’t need this in my life.

I work hard to maintain resilience. For me, it is important to be able to bounce back. To do this I try to eliminate stress, use mindfulness strategies and look after myself by eating properly, getting sufficient sleep, exercising as best I can and by getting spiritual nourishment. Getting a derogatory or negative blast from a “supportive group member” totally undermines resilience.

Some research indicates that depression can increase with increased use of social media. Other research indicates just the opposite. I know for me, the negative impact of my experiences has made me really wary. I have health issues from chronic illness that I deal with on a daily basis and it isn’t always easy. I don’t need to add to my feelings of inadequacy or frustration or even anger by participating in these groups any more.

So I am “unfollowing” them because they are not meeting my needs for help and support. I need to be wary of joining any in the future. I am so glad I found the Mighty. I find so much encouragement from the articles I read. I have never read a negative comment either.