Just how valuable is the Internet to you, this site?

[stillkoe]

I'm doing work on virtual intersex activism. I argue that the Internet enables intersex persons (and their families and/or advocates) to bond, to support each other, and to engage in community building and activism. What might be harder to do offline for a lot of reasons can be done online, including telling stories about experiences from a perspective other than that of a doctor, and of making the case for alternative approaches to treatment that might not be heard.

Just how valuable is the Internet to you, or this site in particular?

Can you tell a story about how you first came to know about the site or other similar communities (if there is one), or about what the Internet means to you.

Telling stories not heard before is a very powerful thing in re-making the world

[Dianne]

Although I haven't been here long (and don't know of any other IS sites), BLO means a GREAT deal to me!

I am 57 and didn't know I was Intersexed until a few years ago when a whole bunch of "dots" suddenly connected and everything suddenly made sense. I was INCREDIBLY ANGRY!!! I was angry at the doctors who hid my "deformity" from my birth mother and mutilated me when I was an infant without anybody's permission. I was angry at my adopted Mom for trying to force me into a role for which I was totally unsuited and for preventing me from seeking medical help. I was angry with my adopted parents, the extended family and family friends who knew about my DSD and never told me even when I was going nuts trying to understand why I didn't "fit".

I had never met any IS people (that I know of) and my Internet search took me to ISNA and that led me here. This was (and is) the only forum I have to meet others who understand and whom I understand and that helped me deal with my anger.

[Kailana]

Well, as far as the internet is concerned, at least for me, I originally found trying to find information on intersexed to be extrememly hard to do. Back in 93, after finally being told i was IS, true hermaphrodyte, leaving the military a broken dispirited soul. It, the internet, was the only source of information, i had easy access too. When i questioned what i was, and found myself falling into despair, i found that at least i could find some medical journal, edited report about people like me.

It took me years to find a support sight. I believe CAHourstories.org was the first i found, that led to Locahsupport.org(this might be wrong, its been a few years), then Caresfoundation which led to hear, so from 93 tell 2002, i only had found sites like Webmd, or Medical encyclopedias. And a lot of those only gave perspectives of how we are to be treated as an intersexed patient.

When i finally found other people that posted there own life stories did i actually find some form of acceptance. I finally found people who could understand me. That is something i needed, as i didnt find it with family.
At least i didnt know i had it, acceptancem untill a serious of overdoses. That is when i started getting answers, a few from parents, then a whole lot more from an aunt and uncle, they actually have provided me more knowledge about all that was done to me. My parents have sense refused to talk to me about what i am. I do know they love me, just wish they were more open with me.

The stability though that i have now, has alot to do with knowledge i have gained from following other peoples posts. Here there is a large representation of many different conditions. People who are looking for answers, people who know what i don't, people who understand and have done marvels for my self confidence. Without this sight, i'd still have been stuck in serious bouts of depression, if not worse(dead).

I hope that helps some. The Medical Community needs to be as open as we are. Understanding of how we are ethe way we are, makes it alot easier to find who we are, what we are able to do. Living a life with doubt, unanswered questions, just eats away at the soul.

[stillkoe]

I want to thank those of you that responded. Your insights are invaluable as I try to make the case about the value of stories online. If anyone else has a story that illustrates how important this site is to them, or the Internet in general, please let me (us) know by responding here. Many thanks.