5 Reasons I Find Online Support Groups for Chronic Illness (Mostly) Unhelpful

Anyone living with a chronic illness knows the importance of having lots of resources at your disposal. If you’re anything like me, Google is your best friend and sometimes this leads you to online support groups. They can be a great resource, especially for people who cannot leave their home.

Facebook offers a wide range of support communities. Sometimes, they help people feel less alone, which is great. Throughout the years, I have been a participant and an admin of many support groups on Facebook. However, I’ve personally noticed these groups can trigger more anxiety and frustration in me than help me. That said, I have also met some really great people through social media and have found some fantastic resources that have helped me to cope and have educated me.

First, I want to say that nobody is perfect. There is no perfect group, church, friend, and so on. So, to expect perfection all the time is not realistic or healthy. However, there are things I’ve personally found to make Facebook communities more damaging than helpful.

I’ve noticed these five recurring issues:

1. Poor admins.

Many times, groups are run by people with little to no experience. Sometimes, the admins have experience with a specific disorder like depression, anxiety, lupus or mast cell activation disorder. While experience is great, you need to have people skills in order to resolve conflicts in an appropriate way. Rules for the group need to be established and enforced because rules and guidelines maintain a sense of order. However, excessive rule-making and trying to micromanage people’s every word and post is highly ineffective. Someone is going to be offended by something. Some people are always offended. Admins have to be adults and let others be adults, too. In an ideal world, this would always happen.

In certain situations, admins are affiliated with an organization or doctor. In my experience, this may make the support group more toxic than helpful because they may be receiving funds from the organization or doctor or giving funds and grants to a doctor for research. This means the admins may be loyal to the organization or doctor before the patients and members of the group. Be cautious of these groups and never give anyone money without doing proper research.

2. Miscommunication.

You can only interpret so much online. You cannot see body language or hear tone of voice. This leads to a lot of misunderstandings and fighting, which leads to more people fighting and then an admin having to shut down the conversation. Then, everyone is pissed off because someone posted a funny meme, or asked a question and one person decided to attack. Now, we have drama. It’s unhelpful for people who are already stressed out and sick.

3. Good intentions.

A lot of people have good intentions, but remember that saying about good intentions? It’s true. Someone means well, but in the end they say or do things that minimize someone’s struggle. They have the perfect advice for you. If you’d just do this yoga, read this book, take these supplements and meditate, you can be healed. Really? If that were true, would any of us be here in this group?

4. The trolls.

Yes, there are many trolls in support groups. You would think that everyone in these support groups were there to offer support and encouragement and receive support and encouragement. The sad truth is that some people enjoy hurting other people, even those who are sick and struggling.

5. Lack of empathy.

Some people do not know how to show empathy. They are sick and they are angry and they take it out on you. Or, sometimes they have had to go through really difficult things alone and so they think everyone else should be just as strong. Other people are ill, but they have lots of money, so they cannot understand why you have a problem getting a bill in the mail from your doctor for hundreds or thousands of dollars. They can’t relate and don’t necessarily care to. I used to think sick people were all on the same page. We’re not. There can be competition, pettiness and cruelty even among people in the chronic illness community. This was something that took me a long time to accept and understand.

On the whole, Facebook support groups can serve people with chronic illness well. It just may take a few adjustments before we get there. I have decided to keep my interaction to a minimum. It’s what works best for me.

Wherever you get your support — from a friend, family member, therapist or online community — remember you deserve basic respect and compassion. If you are not getting that, it’s a good idea to move on. Don’t get caught up with how popular the group is, or how well-respected a doctor is or how big the organization is that sponsors the group. Toxicity disguises itself well.

Wishing you luck on your journey.