I was in the email group to learn. I never once jumped in on conversations about the particular condition because it wasn’t right for me to do so. I only jumped in with something I knew about, presented in a way that said “I here’s some information that I’ve found helpful.” That’s the first issue.

As for the second issue, why I was in the group: What these people were going through was something I couldn’t understand. I could get close, having experienced some of it first hand, but some of these people were in and out of the hospital on a regular basis; I’d only had to be there a few times, and for very minor issues (relating to the condition and testing.) I wasn’t pretending anything.

And it’s funny you mention the being pregnant and “I know how you feel”. When my gastroparesis kicks up and my stomach starts twitching it feels like a baby kicking inside my stomach. (That description has been given to me over and over again by ladies who were pregnant and have gastroparesis.) So in a very limited sense, I sort of know how THAT feels now. Kinda weird.

But let’s take a closer look at your “wife and her pregnancy” example: that’s the wrong question, because I’m still personally involved. How about being interested in pregnancies in general. (Or better yet cancer, since it is a medical condition outside the norm, but still well known enough to elicit emoptional response.) Many of these same questions could be asked, and the answers would hold a similar range, with the unspoken question being “how close am I allowed to get without becoming offensive, distracting or destructive?” Being one that believes that knowledge can be power, and knowing full well that the power is a two-edged sword, that question becomes a particularly complicated one.

For the record, this post was actually written about 7 months ago, when I was in the middle of getting tested for all kinds of conditions (and before I knew about your situation). I just finally decided to publish it because I felt it a fair question, one that would elicit discussion. At the time I was very, very hurt because of this, which was amplified by my own fears, since I didn’t know what was going on with me. Now, your comment points very well at the other side of the coin, which is “do I want other people who don’t have the condition to know what I have to go through, knowing that some will think they understand when they really don’t?” And it’s a hard, very individual question. I don’t fault the group mods for answering in a protectionist way. But it does raise the question as to when is it OK to begin being involved–even if it’s just as support–for something which touches you emotionally though not personally in a non-celebrity cause. (Celeb causes: “cancer” and “AIDS”. Non celeb: “turrets” and demyelinating diseases that are not “Multiple Sclerosis”)

To alleviate any fears: have I stopped caring? No, I haven’t. Take a look at the number of posts. That represents about 200+ people I’ve answered questions for, not including side conversations with far more detail. Have I helped every one? No. But when someone you don’t know tells you “thank you, the information you gave me was spot on”–a thanks I never expected to get–it’s a pretty good feeling. Note that I really only ever talk about things that I’ve been through and know enough about. Otherwise I just ask questions, and do a lot of reading/listening. This is one of the things I do because it comes naturally to me, to share what I’ve learned with people looking for the knowledge. Sometimes it’s just about learning who’s really looking for the knowledge.

By the way, Happy new year.

Honestly after reading the article I was rather suprised. One on how different both the tone and context of your writing from a year + ago, and two, the surprise of being kicked out of the site. Such a site would be full of emotion and intense feelings of brotherhood of people as they bare their intimate thoughts about conditions where they have minimal control. To find out that one of the people reading your exposed musings was someone who was dishonest about having the condition or their intension from the start, well that is a severe break of trust in an emotional setting. Id be very angry. People want the world to care about them and their problems, but only a select circle to know their struggles. If it was for the world to benefit from the depth of their emotion or, they’d write a book.

Here is what I can say from my experience. Trying to help someone with a condition without having some direct (loose or close) connection to it is tantamount to telling your pregnant wife “I know how you feel”.

While your intentions were pure, to provide comfort, the end result is you get pummeled half to death in both cases. Bottom line, do you stop caring about your wife and her pregnancy?