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Partners are supposed to help us through life’s difficult times - so why do they make things harder?
Written by Claire on Thursday, April 24, 2008
It still amazes me that after so much time living with us, and talking to us, that our partners show so little real understanding of our condition, and so little love and acceptance when it comes to dealing with it.
Time and again we are subjected to comments to the effect that "you don’t REALLY need the chair" or "I’m afraid of what people will think" (or requests, hints, allusions, and variations thereof such as embarrassment or dislike of attention because we are different from others). If we were paras, they would never dream of saying such a thing. But since our illness is mental, rather than physical, somehow that makes it less real, less valid for them. They treat it as if having BIID was a choice we made. And it makes us an object of shame.
But we don’t have a choice. These are feelings that we have lived with since early childhood. It’s not something we brought upon ourselves, and we’ve tried many treatments to make it go away. But it doesn’t go away, it’s here to stay. Yes, we can choose whether or not to wheel. But consider that when they ask us not to wheel, they are asking us to increase our mental anguish, exacerbate our inability to focus our attention on the here and now, and deepen our depression, all because they are afraid of other people. Other people - strangers and casual acquaintances - become more important to them than we are.
A couple days ago I told my husband that it would mean a lot to me if he would come with me one time when I’m using my chair. But but he won’t go anywhere with me while I’m in the chair because he’s ashamed of me. Would he be ashamed of me if I had indeed been paralyzed in some accident? I doubt it. But if he was, then he wouldn’t be the kind of person who would be worth sticking around for anyway.
I have to ask myself, what is the difference? If he’s bothered, uncomfortable, and unsupportive of me as a person with an untreatable mental illness, and I stick around anyway, then what does that say about my own shame and acceptance of my illness? But we’re supposed to be partners. We pledged "for better or for worse". If I am having a hard time accepting my BIID, then it seems like he should be the first one to love and support me with it. If I had contracted cancer, I would expect that he would be there to bear me up, shoulder the weight, help me make treatment decisions. But no, I just have BIID, and it’s all in my head, and so it doesn’t really matter. He refuses to accept the only current treatment available: wheeling. Leaving me up the proverbial creek.
In doing so, he makes it not only more difficult for me, but also more difficult for himself. If we had our partners’ full love, support, understanding and acceptance, it would make things easier on us and on them. We would be free to deal with our BIID the best way we know how, and they would be free of the selfish shame that drives them.
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3 Comments
The big obstacle for general acceptance of BIID is that it will be perceived to be a chosen behaviour. I know it is not, I believe it is physical condition we are born with as opposed to a mental illness. But, like mental illness, it is not a chosen behaviour. We are stuck with it.
People see the outward symptoms of mental illness, typically an individual’s behaviour. The person is perceived to be doing this on purpose, and the healthy onlookers say to themselves, yes, I can behave like that also, but I choose not to…Why can’t this person just give their head a shake and straighten up?”
We know it is not that simple.
Those who do not understand nor wish to understand will perceive our behaviour as simply some sort of weird behaviour, an out of season Halowe’en costume, a sexual hangup, or simply attention getting or some other such nonsense and totally not necessary.
As for suffering from a terminal illness or beocoming disabled due to an accident or sickness, nobody normally suspects the victim to have intentionally brought this on themselves. If that was the case, there would cetainly be a differnet reaction toward the patient.
3 On 27 April, 2008, May said:
Our last boyfriend looked normal enough. He didn’t use any assistance devices, but he had a disability nonetheless. He’d been over 550 pounds at one point, and both his knees were shot. Normally this was not an issue, but stairs were an issue - they hurt his knees a lot more than just walking or running. The main thing we noticed with him was that we missed certain things - coming back from Seattle one time, we thought it’d be neat to see a cave we were passing by - he’d not been in one, and it’d been years since we had - totally not occurring to us that caves mean steps, and lots of them.
We ended up having to skip, and we found we were sad about it - not because we were ashamed of him, or unhappy with him, but because it was something we couldn’t share with him. He was willing to wait while we went in, but … it was something we wanted to do with him.
Robin does use assistance devices, and also has a lot of trouble with stairs. We haven’t been out with her when she’s wheeling, but are used to her using her crutch. She’s always used it as long as we’ve known her (actually, not true she didn’t use it when we met her, but it’s burned into our mind as just part of her), and to see her not using it (she tends not to at home, clinging to walls for support instead) is really odd to us.
Yeah, there are things we’d like to be able to do with her, but … we’re not ashamed of her. It’s who she is. We’d actually like to see her using her chair, as we never have, but we also disagree on her need for her crutch. She’s not convinced she needs it for physical reasons. We think she does, although that doesn’t change anything. It’s part of who she is.
Of course, we are here and reading this, which makes us different from many partners right there. :-/
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1 On 25 April, 2008, Jen said:
“Would he be ashamed of me if I had indeed been paralyzed in some accident? I doubt it.”
“If I had contracted cancer, I would expect that he would be there to bear me up…”
I’m afraid we can’t be really sure of these things until they actually come to pass. By then, it’s either a pleasant surprise or the worst disappointment of your life.
A friend of a friend became a quadriplegic and she was enormously relieved when her husband left her. She knew he resented taking care of her; not too long after her injury, she realized he just wasn’t the sort of person who could cope with a life like the one she was going to have to deal with.
Yes, we do expect our partners to do all the good things we would do for them if they became ill or injured. But everyone has a place, a sticking point, where they just can’t go. You may not realize you have a sticking point, but we all do. I found mine and the hardest thing about it was realizing that it was there and I couldn’t get over it.
I hope things work out for you. Truly, I do.