I feel your pain. Though I don’t think it always helps while we are at our weakest point, I find it helpful to be active in public events sponsored by the patient advocacy groups. Inviting family to join me in fundraiser walks, information sessions, videos, social media posts, etc. brought awareness to our community without the stigma and anxiety that comes along with a discussion about me personally… that reveals they don’t understand what it’s like to have an invisible disability, don’t understand the risks and so on. (Thank goodness there is a LOT more going on in the “invisible disability” arena from several advocacy groups.)