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It isn't easy to live with, but things are improving and there is a lot to be hopeful for. There is still a stigma, even amongst healthcare professionals. I advise finding support online and educating yourself and the people around you as much as possible. It might help to take someone with you when you see a doctor, in case you get tongue-tied.
Remember that some people get better and a cure may be just round the corner. In the interim, it might help to change your expectations and find new ways to enjoy yourself, but stay positive, because there is always hope. Remember there will be good days as well as bad.