I understand completely. I have a family member who has Myasthenia gravis (rare and cruel beyond belief).At the risk of sounding like a narcissist, my problem is so rare and disabling (more common problems, like noise trauma, can be just as severe and disabling, but the cause is more straightforward) that I feel like on the advocacy end, once I'm in, I'm in. I want to have a very firm diagnosis before I go public -- this way the doubting is minimized.
Going public now would not be the end of the world or anything, but just with less benefit at this point. Part of my goal for advocacy is to describe all of the precautions and life changes that I take. Saying that I changed out my mouse for a quieter one or that I get symptoms from the muscle contractions of typing -- well that's the kind of thing that goes over better with the backing of medical evidence. I am close, but not there yet.
You're not narcissistic, you said the truth. Those with hearing loss at least have that hope dangling around.
You know I care and if I can help, let me know.
I am praying that you and @Chinmoku get that miracle, it does happen.
As far as advocacy goes, I have an obligation at this point. I will continue to write my letters that nobody returns except for computerized spam, a few exceptions - from scientists who wrote me back. My picture is a good idea for me because it's simple and people can have that visceral reaction.
Your story is important, we need to show the spectrum of what's going on here.
If it wasn't for the scientists stumbling onto the intestines and making that correlation to inner hair cells most people here would truly be screwed. Dumb luck in a way that hopefully will help a few folks here, nothing to do with advocacy or hearing trauma in the military etc.
Anyhoo... take care Zugzug, I am glad to be friends with you.