Friday, May 16, 2014

Support Groups?

Because most of the people that have these chronic, debilitating illnesses I have, there are tons of Facebook support groups out there that claim to be offering support and advice for things you may be going through with your illness. I'm in support groups for Ehlers-Danlos Syndrome, Dysautonomia, and Mitochondrial Disease. Day or night there are depending on the group hundreds or thousands of people right there, at your finger tips, ready and waiting to offer their listening ears and supportive words of encouragement to help get you out of what ever dark place you may be in at the time.

Or are they?

Lately, it seems like in certain support groups you can't post any question without getting jumped all over, and you can't answer a question because you'll get jumped all over (even though you are just trying to help).

Don't get me wrong, there are several of the people that I have met in the support groups that I know will be my friends for life. Because who wouldn't want someone that can understand everything they're going through and be able to relate and not judge you at all. It's so rewarding to have made some of these friendships and almost makes being sick worth it because I never would have met some of these people that are now constants in my life. But, really, if I had my choice, I would still choose to not be sick. But I'm so glad I've met positive supportive people that are truly there to help me get through the crazy and bad days.

But when  you don't even want to go into the support groups anymore because they are so negative and depressing that they physically make you sick, then you are not getting support and you are not able to offer support to others either. Not all the groups are like this, 1 or 2 of the groups I'm in are super awesome. But for the most part, it's people posting negative things about their lives (like I can't go on any longer, I'm the sickest person on the face of the planet, etc), posting their vitals multiple times a day, or other people commenting on people's pleas for help with horror stories that they have heard happen, that are super rare, and it ends up scarring the original poster out of doing whatever procedure his/hers procedure was in the first place. It's just not a good environment. And I noticed a positive correlation to my not spending as much time in groups, to feeling physically healthier. Not kidding. It's like the groups sucked the energy and wellness out of me and made me physically ill. 

Perhaps the most frustrating part of being in these support groups is that everyone is always trying to be sicker than everyone else. If someone posts they have this, this, and this with that, that, and that symptom. Then the next person has double that, and the next person has three times that. When I'm reading all of this that is going down, I'm just sitting over here in my bedroom wondering why anyone would *want* to be the sickest person. Aren't we all striving to be well? Or did I miss that memo? 

Another frustrating thing is when someone asks a question and you give advice and they don't take it at all and keep making excuses as to why that won't work or why they don't want to go to the ER right now. A good rule of thumb to think about is if you have to ask if you should go to the ER, you should probably skip the asking of Facebook and just go ahead and go to the ER. And for goodness sakes if you are asking for advice, don't deny every single piece of advice that we offer you, because that is really annoying, it takes energy to answer your posts. Something most of us don't have. 

Even though there are some bad experiences I've had with some support groups. I've had mainly positive experiences. I've been able to meet several people in person from the Indiana mito group and that's been a wonderful experience. I've also been able to develop deep personal relationships with some out of state people. Unfortunately, the bad experiences seem to stick out in my head easier because of the nature of them and the emotional sting. But if we could all just learn to get along. And not bicker and second guess each other's advice and respect that we are all sick and going through it then the groups would run much more smooth, in my opinion. The important thing to remember that the support groups, no matter how much drama they may cause, show us that we aren't the only person suffering from these stupid illnesses. And sometimes, that's all you need. 

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