Monday, July 28, 2008

Feeling Invisible (Golden Oldie)

From Jan 20 2007

Boy, I've wanted to post in here since this topic came up and I was planning to write something "great" and edit it and it would be perfect but, of course, I never got to that so I'm just typing as my brain crawls along.

Thanks for bringing this up, N. I do think I know what you mean. I miss a lot of the people from the past, too. I know it's very hard to stay with a site for a long time. You get better, you move along. Or you have disagreements with people, or you just get tired of saying and reading the same things over and over.

Although I have a ton of posts, I rarely post anything "real" anymore. All my stuff is news items, about new bios, updated locations, all business stuff.

Why? Well, I figure I've said everything I know already, many times. When I had my Cushing's - before there was any kind of support at all (even at home) there were no options like going to doctors on other coasts, no picking and choosing where you could go for diagnosis and treatment. I did have a surgical choice: NIH, Montreal and somewhere in San Francisco. I chose NIH because it was close, fee, and I didn't speak French.

If my endo didn't work out, there was no possible thought of traveling anywhere. I just waited until I got sick enough and someone believed me.

Nowadays, there are other options and that's a good thing. But it often brings dissent and hard feelings on the boards. People tend to believe absolutely that their doctor/surgeon is the best and want everyone to believe that, too. Or they hate their doctor/surgeon and want everyone else to believe that, too. From these poles we've had many arguments over the years. Interestingly, people who have never seem these doctors will take sides and align with a pro-East OverShoe group or an anti-West UnderShoe group and the board is split into 2 parts with a lot of unhappy people no matter which way it goes. And a lot of those people - in either group - leave. People who feel their doctor/surgeon attacked leave and people who liked the doctor/surgeon leave because they feel misunderstood.

I don't know what the solution is for that.

People leaving because they are cured is a good thing, I guess, but I'd love it if there were a sense of community service or something - if you get cured, you have to stick around and help others for X amount of time. Some people disturb me. They get what they need, have surgery, and we never see them again - or until there's a recurrence. Then, the same pattern.

And of course several people have left us because they died. And that's the worst of all. Every time someone from here dies, it just tears me up. And then there was Sue...

That's what distinguishes this board from other sites. People helping people. Everyone. I know people fall through the cracks sometimes and I hate that.

I'd love for everyone to get what they need here but the boards are just too big now for everyone to support everyone else. In the olden days, I used to respond to everyone but that's no longer possible. I can't even keep up with the new posts. I'll see a name on the boards and think it's a new person but when I look they've posted a hundred times.

A while ago, I posted something to help more people support others - it's at a link at the top of every page and it says "Help Others". It goes to this page: Check it out and help your fellow sufferers even more.

When these boards started I was member #1. Several board changes have changed my number but I was still there at the beginning. I knew P from AOL message boards even before I started this website and then these boards a few months later. She's right - there was N next and a husband desperately trying to get answers for his wife. Little by little the boards grew and grew. We were all very friendly because there weren't that many of us fighting the world and doctors. We only had each other.

Then, there was a legal problem with SupportPath message boards and many of those members came here. And they all "knew" each other and had a history. Of those people, I think only two are left.

Everyone else has come in on their own from places around the web, looking for help, information and support with this terrible disease that outsiders don't understand.

(I think I'm rambling now!)

I think it's very important to support everyone, whether or not you believe in their choice of doctor, treatment, whatever. YOUR way is not always right for someone else. Even if it is, they may not want to hear it.

All that being said...I've felt unsupported here, too. When my last birthday came up, it was listed along the bottom of the page and not one person said Happy Birthday to me. No one. I mentioned in Weekend Check-in that my husband had also not remembered my birthday and that spurred one person to then say Happy Birthday. I found all that to be incredibly depressing and I removed my birthday from the list. I'd rather no one know than have the info available and people not interested.

But what's worse, I think, is if there's a day with several birthdays and people will start topics to everyone of them but one. I've seen that on other boards - not sure if it happens here or not. That's like inviting everyone in your class to your party EXCEPT the overweight ugly kid with the glasses.

Since I was always the overweight ugly kid with the glasses, I know how it feels to be rejected, unloved, unsupported and I just hate for others to feel that way.

Years ago, I posted this on Power Surge (maybe here, too):

There used to be a TV show long ago which involved a cloak that would make the wearer invisible.

Sometimes, I think that I have one of these things on much of the time. People don't see me, they don't see my posts, it's like I'm just invisible.


CS, I join the others who can relate to how you're feeling. People almost never respond to my posts, either. The conversation doesn't usually stop, but people who comment mention everyone's posts but mine, sometimes even thanking someone else for what I've said or the info that I've posted.

So I've stopped posting things about me pretty much. Most all of my posts now are links to other information here on Power Surge and stuff like that. I just can't bear my soul anymore and have it ignored. I've found that most people are interested in what can be done for them, not how to help someone else. I even posted about this way back in 2001, in a topic I started called Invisibility.

People rarely send me PMs. When they do, it's because they want something. I don't recall anyone ever asking how I was. I don't chat in the InstaChat anymore, either because I feel invisible, in the way, like I don't fit in. Almost like Junior High, when you're not with the "in crowd".

So, I can certainly understand how everyone has responded to you CS, as well as how you're feeling. I wish I knew the answers, though - and I hope you feel better soon!

And I still feel that way to a great extent. I don't post here (or there) about how I'm feeling. But it sure is weird to spend so many hours a day working on a site/boards and not feel a part anymore.

I feel like my combo of "stuff" is something that I don't share with anyone else. no one here probably wants to hear about my cancer fears or my fatigue issues (again!) I tried posting some of my cancer stuff as a blog but didn't get very far. Eventually, there was no response, so I locked it so I wouldn't feel hurt about that, too. I'm GH deficient but can't take growth hormone so I don't even fit into that category, either.

Boy, is this turning into a Pity Party! Sorry...time to stop this response.

Anyway, N, I'm sorry you're feeling this way and sorry I went off on a tangent with my own stuff.