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I need to vent my frustrations a little bit...why are some members of the CFS and chronic pain community defensive, abrasive, skeptical and downright ignorant?
Why is it that everytime a fellow member of the community shares something that has helped them, he/she gets attacked, things are said like 'oh that doesnt work for everyone so why are you sharing this' or 'this is only anecdotal so i dont believe this'. We as a community need to come together and listen to more of what helps others. We are in a concensus that there is not a one size fits all treatment...but dont we already know that? Its the same thing in modern medicine. For example with high blood pressure. The doctor has a few blood pressure medications to choose from. Because one medication does not work for everyone. That is obviously a given. But being in this community, it is becoming more and more obvious why there are little to no recovery stories or little to no stories about 'this worked for me, you should try it to'. Some People who are still sick wont believe a single thing another fellow community member says based on it being an anecdote. Its really frustrating and as i am trying to get the information out there about what has helped me i am always met with anger and criticism. It makes me want to give up telling my cfs story to others.
(My frustration is not stemming from the PR community but rather the facebook community, so i am not bashing anyone here. I just really needed to rant)
Thanks for listening.
Why is it that everytime a fellow member of the community shares something that has helped them, he/she gets attacked, things are said like 'oh that doesnt work for everyone so why are you sharing this' or 'this is only anecdotal so i dont believe this'. We as a community need to come together and listen to more of what helps others. We are in a concensus that there is not a one size fits all treatment...but dont we already know that? Its the same thing in modern medicine. For example with high blood pressure. The doctor has a few blood pressure medications to choose from. Because one medication does not work for everyone. That is obviously a given. But being in this community, it is becoming more and more obvious why there are little to no recovery stories or little to no stories about 'this worked for me, you should try it to'. Some People who are still sick wont believe a single thing another fellow community member says based on it being an anecdote. Its really frustrating and as i am trying to get the information out there about what has helped me i am always met with anger and criticism. It makes me want to give up telling my cfs story to others.
(My frustration is not stemming from the PR community but rather the facebook community, so i am not bashing anyone here. I just really needed to rant)
Thanks for listening.