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 Post subject: NOT being a science project.
PostPosted: Fri Oct 08, 2010 3:28 pm 
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Raeni posted this in a CC thread and I wanted to talk about it a bit so I brought the excerpt into Season Passes - another forum which requires someone to be registered & logged in to read the information (since that's the security applied to the CC forum where this excerpt was originally posted - or else I would have put it in OTB so that those with "mad scientist tendencies" could read it too.

Raeni wrote:
One of the reasons I like to be here is because the environment is positive. And I don't feel like a science project/mind reader/fortune teller here - That is another issue I have, and I truly have weighed all sides time and time again...It's not my imagination. When I post on general forums and BPD comes up, I'll usually add to the convo. I happen to be the only one who does this, and I speak from my experiences. People who have exes with BPD or think their exes have BPD, bombard me with PMs asking me to share my life history/my opinion on their partners...And I don't like it. I suppose that is a price I pay for speaking of it. The reason I do it, is because I like to do my part to dispel myths - Many people are really uneducated about BPD, and think we're not capable of change/recovery, and despite years of therapy and meds, we are hopeless. I can't tell you how many times I've had to step away before responding.

It's been a while since I've posted about this so I thought it was worthwhile repeating.

Just after I was first diagnosed with BPD, I lost my insurance coverage for about 6 mos (details are fuzzy, it could have been longer) and I was essentially left to cope with the implications of BPD and try to figure out how to "get better" without professional assistance or medications. It sounds almost impossible to a lot of people and yet to many people (especially outside of the US) it's fairly common with wait-lists spanning weeks or months (as long as 2 years, I've heard) to see a psychiatrist or therapist or equivalent mental health professional.

Anyway, I hit the internet (this was probably 2001 or so) in search of anything relating to Borderline Personality Disorder and stumbled across BPDCentral.com and its discussion forum, the Nook. I was so excited, I glossed over the pertinent details and jumped right in to the boards with both feet.

And landed in the stinkiest pile of doo ever! Yeah, I missed the part about BPDCentral/the Nook being for "the NON-BPD" and didn't realize that these so-called NONs would be so violently harsh & judgmental about us so-called BPs (terms I still loathe, btw.) Many of my first posts were along the lines of "you're way too mean, you're wrong about that, how dare you say that!" You can imagine how well that went over, I'm sure.

Shortly thereafter (I'd guess less than a week after finding it) I was asked to leave and never return. I'd been banned without being banned. Or maybe I was banned but because I was using AOL, I could still access the site/board because I would get a new IP address each time - circumventing the IP-address-ban that was in place.

With my return, I was vehement about "setting people straight" and showing that "we're people too, we have feelings, we're not cruel monsters" - my way of trying to educate the NONs, I suppose. As I began posting again, I knew I had to hide my return so I deliberately scaled back my harsh, direct approach and aimed more posts along the lines of "What if they're not cruel monsters?" or "Is that really how I would want to be treated?"

There were still times when I'd open a thread and just be outright livid at what I was reading. HOW DARE THEY!! HOW STUPID / IGNORANT / CRUEL CAN THEY BE?! And any time I felt that extreme anger rising up, I'd pound out my gut-felt reply and walk away. Literally walk away from the computer. For about a half-hour. When I'd come back, I'd have calmed down enough to translate that "HOW DARE THEY" stuff into something more calm or rational. Again, I didn't want it to be found out that I had returned after being banned because that would just open up a whole new drama about how horrid BPs truly are.

After posting incognito for about a month, I'd gotten accepted (for lack of a better word) by the community. They couldn't tell I had BPD from the way I was posting or acting. I wasn't walking around with a scarlet letter emblazoned across my chest.

Around this time, I came clean - only partly. I admitted to having BPD but requested to sticking around to see what else I could learn, and maybe even share some of the BPD-perspective to help the NONs heal (if they wanted to hear from me.)

Thus began the Science Project, as Raeni described it. I was suddenly EVERYONE's surrogate BP!

Somehow they thought I had a crystal ball and could provide reasons and rationale for everything every BP had ever done to them. It was exhilirating at the beginning. I was getting through to people, I was spreading the word that BPs need love, compassion and boundaries rather than to be reviled, called names and ostracized like lepers (though, I'm pretty sure lepers would have been treated better by that group at that time.)

After about three or four months of that, posting huge possible explanations for all manner and sort of behaviour from people I didn't even know and was only hearing about third-hand, I got burned out. I got tired of repeating myself so gosh-darn much. I no longer got as angry about their ignorance as I once had (which was good, I was starting to separate stuff on a basic fundamental level) but it was still exhausting to pour so much of my heart and soul into something that wasn't helping the person with BPD actually get any better. (I suppose it's possible something I said may have helped a NON establish better boundaries to help their BP truly get better but I can't be sure of that.)

Around that point, I decided "Enough of that b.s.!" and decided to start an ezboard (a free discussion forum) to focus on helping / supporting folks with BPD as they worked on getting themselves better. The rest, as they say, is history.

When I finally got insurance coverage again, I went back to the same therapist who had originally diagnosed me and she said at the end of that first return-session that I had made remarkable strides on my own (meaning without her professional help). While I know I was the one doing the actual work to change my thoughts and actions, that progress was actually due in very large part to my stint as a science project. Forcing myself to "don sheep's clothing" and walk amongst the NONs helped me practice how to think like a NON, rather than perpetuating my BPD thought/action patterns - which were already remarkably well-honed.

I guess the whole point of this amazing diatribe is:

- I think it's a normal part of the process (for some folks) to pursue the path of Educator to those outside of the realm of BPD.

- I think it can be beneficial but there is definitely a tendency for the role to become all-consuming (in BPD? Nah! LOL) so it's important to remember: moderation is the key.

- No one can change anyone else's thoughts or beliefs, especially over the internet.

- Change begins on the inside.

- The most lasting changes are made for and by ourselves. We might temporarily sway someone else or influence a situation but if we truly want to be a positive force for change in the universe, it's best to focus on changing the things over which we have control: ourselves.

- Oh, and something I forgot to mention above -- helping others problem-solve or figure out "why" helped ME. It's usually easier to see the problem, the cause and the solution from a distance (when it's someone else's problem that we have no emotional investment in) and that can be good practice for helping us train our brains to problem-solve our own issues when we're ready to focus on that side.

That's one of the beauties (IMO) of BPDR ... "take what you need, give what you can." There are usually enough folks on the "help someone else as a way to practice my own skills" side of the equation that those that are relying on guidance and advice don't need to go without.

This is by far the longest post I've put up on BPDR in a good, long while. I hope it's beneficial to someone!

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 Post subject: Re: NOT being a science project.
PostPosted: Fri Oct 08, 2010 6:10 pm 
I enjoyed the read - I can relate to those feelings, looong before I discovered BPDR, I found myself on a 'non' board not realizing that's what it was. Woah! I was furiously typing out responses like a madwoman, I couldn't do it fast enough. I also got banned, naturally. Every other word was a curse, the in betweens were insults.

It made me skeptical of sharing on a general forum again, but that was so long ago - And I'm, it's, different. I'm generally well-received there because I'm respectful, clear and empathetic(sometimes it takes me a few tries, after reading a statement like "People will BPD are a lost cause"). I don't really have much bad to say about my experiences being a "surrogate BP"(too cute, love that term), other than getting 'burned out'/dealing with my feelings surrounding blanket statements. I think I've found a good balance for the moment, where I can continue to give as seen fit, yet preserve my mental health and not go to bed fuming over responses like I did on that 'non' board, lol!(Now if that happens, I am going to have to back off again until I find my happy place) Will I stop 'spreading the word'? No. I know better than to believe I can sway the masses, but my one wish is that someone will just REALLY read it - Not agree, not disagree, but take it with an open mind. And that, I'd say, is a pretty realistic expectation.

But one of the reasons I don't like it IS because it has the potential to be all-consuming..Gosh, what doesn't? I get hooked, fast and easy. At least these days, I keep my hobbies for more than a week!

I don't mind if you'd like to move this to OTB.


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 Post subject: Re: NOT being a science project.
PostPosted: Sun Oct 10, 2010 7:29 am 
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Thanks, Ash. I especially like this bit:

Ash wrote:
The most lasting changes are made for and by ourselves. We might temporarily sway someone else or influence a situation but if we truly want to be a positive force for change in the universe, it's best to focus on changing the things over which we have control: ourselves.

Whenever I see things wrong in the world, I want to change them - whether that's challenging harsh blanket statements about BPD or trying to help someone else in their recovery. It's easy to get caught up in those things and neglect my own recovery needs, so that's a very useful reminder. :)

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