It is about time that we recognize what is happening

October 21, 2011 at 10:43 am

I thank Yuehan for starting this thread. I am one of those who have stopped posting due to the recent few that viciously attack ideas outside of the AMA. Since my GBS 5 years ago, I avoid confrontation and negativity. It angers me to see a few people taking away Hope from those who are desperate to find a solution. I can name those but won’t.
I asked my dear friend and therapist why some are not willing to try simple ways to get better. (When I had GBS the first time, I was willing to do macrobiotics if it would stop the paralysis. Anything. He advised me that it wouldn’t give me the results I wanted.) He said that some people do not want to get better. They become their illness and like the attention it gives them. This boggled my mind.
I get private messages asking for my help. When I email back that I need to talk to them to save time, I never hear back.( I have free phone minutes.) They want a quick fix. I need to find out what their body is telling them. All of their symptoms…to see how all the pieces of the puzzle fit together. I respect their decision and do not waste my time.
I had a man from England find my posts and write to me. He does not have GBS or CIDP. He wanted some suggestions to get off the 16 years of steroids due to his skin condition.
I find it sad that these few negative people have driven many of us away. I do not think it is because we are healthy as much as that we don’t want to be attacked for what we write. PLUS, when we are attacked, there are only one or two who speak up in support of us. So it looks like the rest are in support of their criticism of us.
I am healthy and wanted to share what helped me. I do not want to abandon our group. Someone should do something about this situation. I thank all of you who have contributed to this post about what is really happening. It is a shame to see “a few of them” drive us away.