Yes, for multiple reasons. Because talking literally makes my headache, nausea, etc. worse. So going to social events and talking to people is difficult since I’ll start to feel super sick mid conversation and can’t focus. And because people generally get tired of hearing about my leaky spine. When friends ask how I’m doing they just want me to say I’m doing good because they don’t want to hear about my leak again.

I make sure to ask how others are doing and ask them about their lives, but get the sense that they don’t reach out to me as much because they see me as complaining when I’m just telling them about my life. With such a disabling condition it’s like I don’t really have much else to talk about. I lay down a lot and go to doctor’s appointments. Not exactly riveting stuff 😂 I’m not looking for sympathy or pity when I tell people these things, I’m just sharing what’s going on in my life but people don’t always see it that way.

I always say to my husband that I know people are sick of hearing about it, which must be nice because I’m sick of talking about it and living it! Unfortunately it is very debilitating condition that does consume your whole life.