I don’t mean to sound defensive, BUT….. I am often lured into talking about it, and that tires me more and happens more often than me starting the conversation. It seems that my often being accompanied by my walker or cane is an invitation, or maybe an obligation, to ask me about my health.

Some are just curious, well-meaning, and often forgetful acquaintances in my social community who start with “What happened to you?” I’ve tired of explaining what all of us here are going through and just say “unexplained neuropathy”. Some will leave it alone at that, but most want more detail, offer unsolicited advice they have no idea about or that I’ve heard repeatedly already, but many use it as a segue to tell about all the medical issues they’ve ever had that required them to use a cane or walker. Those situations exhaust me.

Family and friends always ask, and I pretty much have a standard answer - “I have good days and bad days, and today is pretty good,” then I try to move onto another subject. After 8 years, there’s just not much to add anymore nor is there much medical help or experienced suggestions they can offer, so I don’t want to be a friend or relative always talking about medical stuff…

What I find really annoying and lures me into unwanted lengthy discussions is having to explain WHY I can’t do something they want to or think I could do if I really wanted to. Things that involve stair climbing, excessive standing, or a lot of walking for example. Things I know I physically can’t do or that the risk of injury isn’t smart to take given the devastating life consequences it can have on my already disabled body. Those are the conversations that turn off my friends and family because they do not understand and it frustrates them because I’m “defensive”. That’s when we tend to separate a little, because quite frankly, as we all know, they “don’t know what they don’t know.”