For those of us with invisible illness and chronic conditions, Facebook Groups have become a staple! Not that long ago, social networks were not considered a place for support. It was where the younger generation went to connect, share, and play. But it expanded and now allows people from all over the world to come together and find a common ground. Groups are everywhere and can be found for almost every subject. Some are open to everyone, others are closed (requiring an invitation or friend in the group to join), or secret (where the admins has to accept every request to join). Each kind of group can be helpful for people with chronic illness, especially closed/secret groups that tend to become very personal.
But how personal is too personal? Why is it that we find it easier to open up and talk about personal problems to strangers on-line than our friends irl (in real life)? I have a lot of experience with this! Even though I am very open about my pain and illnesses, there are so many times that I want to vent or complain about how much pain I’m in, but the thought of posting it on my main feed just feels… wrong. I’ll look back at my recent posts and see the last time I “complained” and think twice about hitting send. I feel like a burden to my friends and it pains me even more. So I’ve started leaning more and more on my groups for support. These are people that know what I’m going through! They are dealing with the same pain I am, so my venting isn’t an annoyance, it’s an average day to them.
It’s easy to get “hooked” on that feeling of community and join every group imaginable, but I caution against that. I have made that mistake and had some bad experiences. Some groups are extremely supportive and have people in them that offer information as much as they do consoling words. Other groups are all about drama and gossip. They commune under the guise of chronic pain support, but all they do is talk about how horrible people are to them. I cannot stress this enough, don’t allow anyone to bring you down! Whether it is on-line or irl! Venting and complaining is one thing, but if all someone does is make you feel small or unimportant, they are not worth your time. Period.
I’ve made several wonderful friends through on-line groups! These are people that “get me”, they know what I go through on a day to day basis and don’t judge me when I need to let it all out. I also know that they will have practical advice for me if I need it on certain subjects. Do I know for a fact that if I had known these people irl, that we would have been close? No, of course not. But I know we are now, and that’s all that matters.
Some advice I would give if you’re thinking about joining an on-line support group. Contribute. Contribute. Contribute. Don’t feel like you have to be a spectator, unless that is where you feel comfortable (especially at first). But the more you contribute, the better you will feel about opening up and asking for help when you need it. Contributing isn’t just posting images and/or articles. It’s commenting on other people’s posts with some insight that you’ve learned through your personal life, it’s reacting when people say they’re having a rough day, or it’s offering a virtual hug when that’s all you can do for them. You’ll find that your experience with groups will be more rewarding and that it will take less time to incorporate into the fold.
A message to my friends (on-line and irl): Thank you! Thank you for being there for me whenever I need you. Thank you for listening to me whine and moan about every aspect of my life, especially my pain. Thank you for being you!