Facebook seems to have everything these days. Facebook groups have largely replaced online forums as a place to go to get questions answered about most any topic. But, not all Facebook groups are created equally, especially when it comes to finding support groups.
For years, I largely avoided the support Facebook groups because I found most to be poorly moderated, resulting in a group that was either filled with spam or just generally negative.
A while back I posted about the importance of support groups when living with chronic illnesses. I still maintain that they can be extremely helpful, especially in the early days of diagnosis. Just knowing that you aren’t alone has a great value.
Unfortunately, what I often found both in person and online is that support groups can be very negative places. They are often places where people go to complain about everything related to their illness and life. As a result there is very little positive encouragement or information offered.
Thankfully, that isn’t always the case and there are some really good ones out there.
After years of joining and then quickly unsubscribing from probably hundreds of Facebook groups I’ve finally found a handful that I really enjoy and find to be filled (mostly) with others who want to help rather than tear down. The information provided isn’t always perfect, but it’s not shared with ill intent.
As with any information shared online (including here on my blog) you should always do your own research (in this case, join them and see for yourself if they are a good fit for you).
Keep in mind that if a group is public that means anyone can join and anyone can see what you post there. I’d suggest avoiding those, and looking for groups that are private or secret. Private (aka Closed) groups require moderation to join and those not in the group can not see what you post. Secret groups are invite-only groups with the highest level of security.
The groups listed below are Private (or closed) groups.
Attitude of Gratitude with Chronic Pain is a group for those who strive to live life to the fullest despite chronic pain. The focus is on positivity and gratefulness. There is no talk of remedies, treatments, or protocols allowed. Pity or sympathy-seeking posts are not allowed.The mission of this group is to be a place you can go to 24/7 and feel uplifted, inspired, and encouraged while living a life with chronic emotional & physical pain & illness.
What Works for Fibromyalgia has grown to be a pretty large group. However, despite the size it’s still maintains focus. It’s well moderated and the focus is on sharing things that work for fibromyalgia. This isn’t meant to be a support group, but more of a solutions group. It’s not a place to go and share your struggle but rather to share what is working (or to ask others for feedback on solutions you encounter).
Fibro For Us Support Group is the offspring of the Fibro For Us page. It is a support and chat group for fibro fighters only. This is a group where members can have discussions, share their story, and vent about things that relate to Fibromyalgia and Unseen Illness. However, they have pretty strict no drama and no spam policies.
Friends Because We Have Fibro and/or CFSME (or others) is a positive support group for anyone with chronic illness. This is a group for support, encouragement, understanding, & friendship.
😀 Laugh~with~Fibro! is a support group with a twist. It is a closed group that is open to anyone with fibro or their friends and family. However, instead of just sharing your stories you are encouraged to find a way to put a positive spin on the experience by adding some humor, cracking a few jokes, or ending with a positive message/silver lining to share with everybody.
Chronic Pain Warriors is a support group for female chronic pain warriors (sorry guys). All topics are open for discussion but there are very strict policies regarding respecting others (including not spamming).
Fibromyalgia Life Support is a place where fibromyalgia sufferers, their friends and family can come when they need support and friendly laughter.
Counting My Spoons Community group – For years I’ve considered starting a Facebook support group. And, for years I’ve rejected the idea because of the amount of work that would likely be involved in moderating it (especially once it grows to any significant size). However, last month I finally broke down and did just that. I created a community group attached to my Facebook page.The hope is that it will be a good place where we can inspire each other to live positively despite our pain. To focus on the positive. That doesn’t mean we deny our pain exists, it just means that we choose not to let it take over.
Have you found other groups that provide a positive place to share with and support others with with chronic illness? If so, share the links in the comments below.
- How to keep from growing bitter when you aren’t getting better
- My favorite ways to cope with fibro
- Getting past the sadness & isolation of chronic pain
- The fibromyalgia treatments that have helped me most