I completely hear you....and I'm probably one of the 'cheerful' ones you described in your posts. Never in a million years would I mean to diminish the annoying and sometimes life-changing symptoms caused by BFS. Thankfully they seem to wax and wane in everyone. I know that when severe fatigue strikes me, I can barely get through a day.
Those of us who 'cheer' about the word benign, I believe, are cheering because it helps us overcome the gnawing fears of ALS. There are still quite a few people on this board (in my opinion) who have NOT fully accepted that ALS has nothing to do with BFS...and they are still on their own pathway to accepting the diagnosis for what it is--BENIGN. A lot of fear and worry on this board stems from fears of ALS. Needless fears, yes, but they are fears that are still very real to some people. The sooner these people can 'celebrate' the benign diagnosis and truly accept it, a lot of their worries will diminish. The annoying physical symptoms may still be very prevalent indeed, but the mental anguish will finally diminish. Hope that makes sense.
It would be ideal if the 'support' aspect of this board was focused only on helping each other deal with physical symptoms of BFS. Unfortunately, many newcomers (and even some oldtimers) still have ALS worries, and this board is helping them overcome those worries....which is where the 'celebratory' aspect of 'Benign' comes in.
Those of us who 'cheer' about the word benign, I believe, are cheering because it helps us overcome the gnawing fears of ALS. There are still quite a few people on this board (in my opinion) who have NOT fully accepted that ALS has nothing to do with BFS...and they are still on their own pathway to accepting the diagnosis for what it is--BENIGN. A lot of fear and worry on this board stems from fears of ALS. Needless fears, yes, but they are fears that are still very real to some people. The sooner these people can 'celebrate' the benign diagnosis and truly accept it, a lot of their worries will diminish. The annoying physical symptoms may still be very prevalent indeed, but the mental anguish will finally diminish. Hope that makes sense.
It would be ideal if the 'support' aspect of this board was focused only on helping each other deal with physical symptoms of BFS. Unfortunately, many newcomers (and even some oldtimers) still have ALS worries, and this board is helping them overcome those worries....which is where the 'celebratory' aspect of 'Benign' comes in.
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