OK, I am having to get something off my chest.
Why am I posting this? I was “visiting” a new group to see if I might understand a friend’s illness. The first post upset me! Enough said.
People! If you are on a support group do not be mean! Choose your words kindly, lightly, with love, and think “how would I like to read these comments to myself”.
Also, a support group is no place for “potty mouth”! You never need to cuss, call names, or belittle another person or doctor.
A support group is not a political forum. Most of us have too much to think about to read negative comments that are not supporting our illness; they are a form of negative impressions, conjectures, and ideology. There are plenty of groups you can join for political spiel.
When there are groups who get new members daily, these new members are doing several things. They want to learn. They are seeking. They are judging. They have a desperation to find kin/kind souls. They need to know someone else has walked this path.
I can remember when I found my first group. I was scared. I was excited. I was saddened. I was shocked. As a newbie I posted something and was surprised that some members were so helpful and understanding. But also, one was rude! Yep, bite your head off rude.
Yes, I stayed with this group, but ….. I went back to just reading. Later I stepped back into leaving comments on questions. I quickly realized that some people were assuming that a comment left was being left as the “gospel”, or as if they had failed because it did not work for them. In the world of medical support groups, a person should be forewarned that one size band-aid does not fix all wounds.
There are those members that think everything needs to be backed up with hard evidence, years, and years of research. That ideology is what has caused a lot of doctor’s inability to help their patients, much less believe their patients. Example, my disease, Tarlov Cysts. So why do the patients of rare diseases expect it from the other members of a group. If your disease is rare than it should be understood that treatment is rare and no long experience to back up each treatment is available.
A support group is out there for us to “see” what other members have tried. Common sense says it might not work for you, but it is so wonderful that it worked for them.
We ask questions, even ask for polls of what each other’s opinion is. So what if it is done in a spread sheet. An opinion is just that, a view, an idea, a thought; given from a personal stand point. No one says you have to grasp and use that opinion; but do give it an honest and open perusal.
I love my support groups, but I do take breaks from them. One thing I cannot tolerate is when one person is rude to another group or person in the ‘other’ group. You can read it in their tone when they make comments about other groups. Maybe they need to take a line from a kid’s movie. If you can’t say something nice, keep your fingers off the keypad. If you are in a terrible flare, maybe refrain from commenting. Ask for help and prayer, we love to lift our members up.
To those that are new to the group, please, please hang in there. We are all human. None of us know all there is to learn. Some are great at research; some are great with kind words; and some are unashamed in sharing their most intimate problems with their disease.
There are some groups that are not great fits for every member. Keep looking. Take nothing personal. Like me, you have more on your plate, (I won’t be trite and say than a normal person), than you might want to deal with daily. So do not waste your energy on allowing other’s comments to wear you down. As a newbie, take nothing as gospel, try some of the things you read, and ask, ask, ask. Again, who is to say that rude person is having a worse time of it than you are and needs your support. But a word about the “potty mouth” – – leave that group if the administration does not correct or remove those posts. “Potty mouth” brings you down and can affect your own mental well-being.
Please do not let the few negative members of any support group keep you from joining one. Everyone needs support, even if that support is for your funny tailbone, or your hair going gray. Who knows but that someone in that group will need you. Take and give, but do it kindly.