A rant in the form of reflection. It’s been about a week since I’ve been getting worse, having muscle loss and the burning in my skin continues, weakness and all the symptoms we already know. At the end of December it will be 4 months since I had the crash, I know that many will say, ‘‘it’s still too early for you, you’re desperate’’ anyway. 3 days ago I saw that the pssd community started making videos that were highly engaged on social networks, criticizing the attitude of doctors who say they are crazy, that it’s in their heads, that the symptoms are imaginary. I’m impressed how few reports of sufferers of our condition on youtube or any social network and there are huge amounts of sufferers in forums and comments on youtube in some video that has the courage to post our condition. Most videos on youtube about our syndrome are from doctors who dispute our situation and say it’s not real or those who recognize the syndrome and don’t know how to treat it and blah blah blah. I know it would be a utopia, but have you ever imagined if instead of typing here in the forum about recoveries and discussions about whether or not this is possible, we would make each one their report in video form and post it on YouTube. Many say they are ashamed or something like that, but you agree that if we had known about this range of symptoms, we would not have used any type of 5AR inhibitor. I at least believe that the vast majority would not have used anything, but whatever. In order to have visibility, in addition to research, we need to expose ourselves. We are many.
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