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Thank you so much for this, Dan. I really appreciate benefitting from the insight of your experience. It does make sense to me that the outcome for you has been better than expected.

Very well put.. We all know ourselves quite well, convincing others of what each are about is something different.

Hi, Dan, I am very happy that you can be yourself. Another thing is that our world needs to see ordinary and balanced people with a handicap. Not those super ones who run marathon, just normal guys. And the thing about BIID is that we would be the best candidates for that because emotionally we already accepted it and we would not be ashamed of our impaired bodies.
I realized that today when I was in a library, wheeling. The librarian and I talked a little bit and she said something like: “If anybody needs to be in a wheelchair, I’m glad that it’s you because you bring a positive witness to it.”
Any of you had a similar experience of being a positive influence when you “live your BIID”?

Hi Elisabeth,

when I “live my BIID” by wheeling, it is only for short times and I avoid too much contact…

But when I live my BIID by telling others and talking about it, it always was great and I got a lot of compassion. (Well, only 5 people who are near to me know about my BIID so far.)

Dan has also written: “My experience is that there is very little trouble telling the real story. Most
BIID people, I think, are deathly afraid of a problem that hardly exists. This
is a mental disability in itself.” (http://health.groups.yahoo.com/group/fighting-it/message/10069).

Overcoming the fear is an aim in itself, and I want to do some courage training by telling more friends about BIID and thus overcoming some of my fear. So I can at least treat a side effect of BIID.

Hi Elisabeth,

Yes, totally. This morning as I was headed to my office, I passed three people together, who work in the same wing as me. One of them commented that they’d never be able to keep up with me. I replied, grinning, along the lines that wheelchairs are much faster than walking and I couldn’t imagine why everybody doesn’t use one. Maybe I’m overdoing it, but I have the urge to counter the negative stereotype, such as from people who tell me it’s awful that I’m permanently in a wheelchair.

Hi Phil,
it’s interesting to see how different we all are, even in treating our BIID. I need wheeling to feel fully myself and I like to talk to people, if I’m a in wheelchair or not. Surprisingly once I started wheeling, I don’t feel any need to explain that BIID is a cause for my wheeling. I admire your courage but overcoming of my fear was to start wheeling. And I can imagine that eventually a frank explanation will follow but I want the explanation to follow my friends’ comment about how natural and normal it feels when I am in a wheelchair.
I do disagree with Dan’s comment. People do have very hard time accepting mental variations and very hard time accepting people wheeling for not a serious physical problem. But I might be wrong. I wish I was wrong.

Dear Elizabeth,

A few people I have met do have a very hard time accepting mental variations. Those are people that I wouldn’t care to be around anyway. Life is too short to waste on them.

A more common reaction is inability to understand. Then I have a backup story that they will accept. They tend to forget immediately what they cannot understand.

I’m going to have to side with Dan regarding telling people about BIID. One of my partner’s former psychotherapists, who knows about my BIID, likes to say “You are only as sick as your secrets”. Having told close to a hundred people by now, I’d have to say that I feel much better not to be living in fear.

Thank you guys and a lady for enlightening me. I agree that the inability to understand is more common. So what is your backup? And who do you share your story with? When does one need to explain and when not?
Thanks.
P.S. Sorry Shawn if this is not relevant. I hope it is.

Hi Elisabeth,

My backup story is that my foot was very painful due to an old injury. If anyone gets more curious than that, I trot out terms like cold injury, or reflex dystrophic syndrome.

I tell close friends, family, and all medical professionals about BIID. Others, I tell the backup story unless they get too curious. Sometimes I tell the real story and they refuse to believe it so I have to tell the backup story.

One guy I was working with, I told the backup story, but as I got to know him better I figured he could handle the real story so I told him. He said it made much more sense than the backup story because I was way too happy for a new amputee. And he was supportive of me and of surgical treatment for BIID.

Nobody has been offended when they heard the backup story first and the real story later.

This is a highly relevant and important topic, Elisabeth. It is a difficult aspect of BIID that many of us need to face.

About 18 months ago I was working through the issue of telling people with my psychotherapist. His advice was that it would be better for my mental health if I was able to be pretty open about BIID. I believe he was correct; for me anyway.

But yes, you do need a backup story. If possible, I would recommend a backup that is as close to physical reality as possible. I have been able to avoid telling any direct lies by referring to my skiing accident.

Like Dan, I have had people refuse to believe me about BIID, and they assume that I am paralysed even though I have directly told them that I am not.

Dan, that’s very interesting about telling the real story to people after they have heard the backup. It is a bridge in the saga that I have yet to cross but it comes up in my mind frequently, especially regarding coworkers.

Thank you, Chloe and Dan. You both are most helpful.
So far my story is that I am fine and this is temporary (what a relief for people). If more info is needed I just say I have a foot problem which I actually sometimes do have and it’s very painful. I am meeting a good friend of mine on Friday and I know I would need to be more frank with her. So how do you explain it to your friends? How do you say, I am fine, I actually feel more myself when I am in a chair, some of us just feel that way?

Hi Elisabeth,

I think things go best if it’s presented with self confidence, and without shame or embarrassment. Depending on the friend, I might throw in some humor too.

The way you put it at the end of your comment sounds excellent to me. Then you can just respond honestly to the inevitable questions. If you have a feeling that things are going badly you can throw in the painful foot as an extra. Remember that the BIID and the foot problem are not mutually exclusive. I sometimes put out the fact that my physician suggested that it’s good for my health to use a wheelchair. This gives me a safety net when I explain that I like being in the wheelchair and I can get up and walk just fine. My suspicion is that people are less likely to be critical of BIID if they are also aware of something physical going on, albeit minor.

Best wishes for Friday, and “please* let us know how it goes. I think this is important stuff to share.

Hi Elisabeth,

just say it – in the way that comes to your mind, comes from your heart.

You can be embarassed if you feel embarassed. You can be sad if you feel sad. Just be yourself, open your heart, and it will be good. If you feel like crying, the cry.

A friend understands everything, you don’t have to act or show a facade.

And everybody is longing for true emotions.

Very good points, Phil. I’d actually forgotten that, when I first started telling people, it would make me cry. I’m much less emotional about it now. It can be extremely intense when you first start letting it out.

Hi everybody,
just a little update. I was able to share with my friend today about my BIID and she took it great. Said she couldn’t understand but that “there are more things in heaven and earth, Horatio, then are dreamt of in your philosophy.”
So guys thanks for your encouragement.
Oh, and from now on, when somebody asks about my wheelchair, I just say that I need to use it sometimes.