transabled.org

My personal experience with telling my parents was a disaster. They saw my mental problems as me insulting and hurting them to such a degree that they couldn’t talk to me for a week. Everyone’s parents are different of course but my parents hold a common view that they do not want their daughter to be disabled.

As for your husband I’m not exactly the fountain of knowledge ;) I’ve never been married (or lived with someone). What I do know though is that honesty is very important in relationships and the question is would your husband rather know the truth now, or find out after a long elaborate web of lies?

Zoe, I have found that the best way to get through to people is to explain that it’s a neurological disorder. The verdict on that is not out because they’ve not studied enough people, but I’ve been told privately by the researchers that the results so far indicate a neurological irregularity and they are CONVINCED of this. Specifically, they believe that it’s a congenital defect in the part of the brain that processes body image. I have had a lot of people who were initially negative come around once they learned that it’s neurological and it’s not some need for attention or other psychological problem easily treated in therapy. That’s much easier for most people to accept and understand. (That doesn’t say much for the validity of psychological disorders, but that’s another discussion).

As far as not being psychotic, you can show him the Newsweek article on BIID in the paragraph about Dr. Michael First:

“He found that they were far from psychotic. You almost have to see it to believe it,” First says. “These people say, ‘Every minute of my life I feel like something is wrong.’ But it doesn’t impair their ability to relate to other people. They are completely in touch with reality.”

As for Munchaussen’s…no, I don’t do it for the attention. I don’t even like most of the attention I get as a wheelchair user. What I do enjoy is people perceiving me as I perceive myself, but that’s an entirely different thing. I have read about pretenders enjoying the attention they get in a wheelchair (or fantasizing about that attention), but this seems to be more from the variety of pretender who doesn’t have BIID and who do it because they are wheelchair fetishists and such. I think anyone who does it for the attention has to question whether this is truly BIID or not.

We are all different, and we all have different relationships with loved ones, so I’m not sure that there can be a “one size fits all” answer to this question. All I can say is what has worked for me and my partner. We were discussing it very recently as I had forgotten exactly when and how I first told her. It seems like such a long time ago now, but we figured out that it must have been this February (2008), or thereabouts, that I was explicit about it for the first time.

I gave my partner some kind of article about BIID to read. Neither of us can remember exactly what is was. She commented that she could understand how people might feel that way about themselves. I took that as a very good sign and said “Well, that’s how I feel about myself”. Then I elaborated. This did not come out of the blue. She had been used to seeing me in leg braces around the house at weekends for some time. Also I had brought up the subject of BIID in a general way once in a while. Still, it was pretty scary for me. It was the first time in my life that I had ever told anybody. This was just phase one.

Phase two was after I got the wheelchair. My partner had to get used to seeing me in the wheelchair most of the time I was around her. This took some adjustment too. Now she comments how weird it is to see me just get up out of the wheelchair and walk around, which I indeed do sometimes at home. She refers to me as *being* paraplegic. I do think it helps that she has always felt very compassionate towards people with disabilities.

Most recently, phase three has been about discussing that I do in fact intend to injure myself. This also took some adjustment on the part of my partner, but she is accepting and supportive of this.

What I’m getting at is that I don’t see the issue as a one time explanation, but rather as a continuous dialog. My partner and I discuss BIID every single day. We both have a lot of things to process about it. I don’t want to imply that it has all been plain sailing. It has not. We put our partners through a LOT with this. It is good to remember that they need compassion for their feelings about it too.

Thanks again for your enlightened replies.

I should have been a little more clear with my post, but i was actually talking about Munchassen’s by proxy rather than Munchaussens’s per se.

And, i was going to make this the subject of another post, but it is, i think, important to raise it now, i also do not consider it is an attention issue for me either.

I have recently engaged in interaction in Second Life as a wheeler, and i was surprised by the attention that i garnered. The attention was unwanted, and unsought, however, it came nonetheless.

As someone who suffers from BIID, i considered the attention unwarranted, however, i do concede the point that it is unusual that someone would consider being disabled in an environment in which they could be whatever they wanted to be…

As for my husband, my latest tack has been to try to get him to understand that even if he knows the truth, we can hide that from everyone else, because they dont need to know the real reason.

I havent been successful yet, but i still have hopes of turning him around. And Claire, i plan to employ the tactic of having him consider the academic papers surrounding the subject, so maybe, he will one day understand.

Good luck to all,
Z

Munchausens BY PROXY??? No, I can’t identify that in the remotest way. Good God, I’d have myself committed permanently if I ever felt I needed to inflict harm on my children.

Claire, actually i was positing the other way around, not us with our children, but our parents with us

Oh, okay. I still can’t identify with that.

Regarding Munchausen’s by proxy: I no longer have parents to be considered. However, the issue did remind me of the pleasure my partner takes in pushing my chair when we are out together. My preference is to be independent, but it is a little token I am happy to offer her in exchange for what she puts up with.

If our loved ones can find some positive aspects of our BIID, then I would go with it so long as no harm is caused.