No one is more surprised than I am that I have something to contribute here. My hope is that it what I share will not have a sad ending, but it is worth noting what happens in any given moment I guess.
I've been getting to know someone, a regular "healthy" man a year older than me. I was well enough to go to two trivia nights here in town (been sick since unfortunately) and he is a friend of an acquaintance. He asked me out and I had to decline (wasn't well enough), but we started talking on the phone and chatting on the computer and were able to visit a few times in person. We both spoke very openly from the start about having trust issues with people (his from a divorce), and mine from being ill, though I didn't mention what it was; I think I called it "the thing no one could accept." He hasn't pushed me to say anything, but he did mention he noticed all of my pill bottles (herbs, supplements, etc.) and sort of figured there was a health issue. I decided to just end the conversation because, out of the two people I've shared this dx with, both made me pay dearly with very abusive comments and behavior. He was getting ready to leave for a trip and asked again about things and I slipped the words, "I have ME" out before I could really stop myself. I voiced my frustration with having told him and have been feeling awkward and vulnerable. He gave me a call, while on vacation, and mentioned that he'd researched ME several days before when he'd had internet access. I didn't respond terribly gracefully I'm afraid and I sat waiting for the inevitable comment, misunderstanding, rejection, but he just said that he'd like to know more and maybe I could point him in the right direction for more info. He asked me if I had much pain and said that he hadn't thought about that being a part of the "bottles" and my allusions to being tired or unable to do something. I felt scared and defensive and shocked! All I could think of was that, in ten years, not one healthy person I've known has ever said or done anything like that. I told him I didn't know how to respond because I just assumed it would all be too much. He kind of acted as though it wasn't any big deal and said that when he finds out about something, he likes to learn more about it.
I haven't known him long or spent much time with him, but I was overwhelmed that the dirty, awful secret was out, and he didn't want to stop talking to me or getting to know me. All I can hope for is that I remember what that felt like and it's now in my memory of what is possible for someone to say and to speak honestly. I doubt he knows just how much it meant to me that he would listen, take initiative and ask further. To help put my surprise into context, this person used to work for the Coast Guard, snowboards religiously, hikes, swims, etc. etc. and I couldn't imagine experiences more different from my own. Surprisingly, the Coast Guard apparently keeps track of injuries and over time people are given labels of disability, like 10% for a back injury or 90% for several injuries sustained over the years, so I guess the concept of "disabled" isn't so foreign to someone with that background.
In my experience, people come and go. But hopefully that feeling of being seen and conceived of as whole will remain. In my ten years of this, I've never experienced this kind of invitation to be completely who I am and not to be embarrassed. It's a strange sensation, like walking out into a parallel universe...
