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-   -   Disabled Folks (http://www.polyamory.com/forum/showthread.php?t=31076)

nondy2 10-28-2012 12:11 AM

Disabled Folks
 
Can someone point me to a thread where people discuss their own or their partners physical disability.

i did find Redpepper's post asking people not to use 'retarded' bot nothing by people with physical disabilities.

I still haven't resolved my thought about my husband dating someone who goes to/has sex parties- but I spent more time with her tonight. She is a brilliant loving person. I think I'm just less interested in (?) sex than she is and don't see life through a sexual lens. & I am accepting of our differences. I think I may be poly because I am cab able of being very emotionally intimate with many many people at once, but strangely, I'm sexually mono.

dingedheart 10-28-2012 01:23 PM

I don't there's too many. I think I remember a wife pushing the husband to find a gf because she in wheelchair ( spine injury ) but he was hopelessly mono so it didn't work. The clever names people come up with and there spellings makes it really hard for me to remember thing I read a day or week ago let alone a yr.:). Bottom-line it was a long time ago.

NovemberRain 10-29-2012 02:05 AM

It could be this thread. :)

I am one of the invisibly disabled. I have a piece of paper somewhere that declares the percentage disabled I am, from a work injury long ago. I have a stupid genetic condition that makes my collagen broken, makes my ligaments loose (so my joints dislocate, all of them, at random), and provides me the joys of chronic pain. Sometimes I limp, and I walk slowly (and not far); but pretty much, you cannot see any of my disability when you look at me.

It has made for interesting times with partners. Most of my partners have been completely physically normal; FBF is not neurotypical, but strong and healthy. CBF is overweight, and has profound hearing loss (though it doesn't prevent him from carrying on as if he didn't)(it makes life fun).

They have a hard time understanding. When a normal person has an injury, they have pain, they take meds, they wait, they might do physical therapy; but they eventually get better. There is no getting better for what I have. There are good days and bad, and it's very difficult for people who don't have chronic pain to understand.

I've been in chronic pain for over 20 years, so I've quite learned how to manage myself and my interactions. I rarely take it personally when someone has a hard time with it; I know they can't understand.

I tell people early, because I don't see any point in hiding it. If you can't deal, I'd just as soon you go before I get attached. However, a lot of people don't understand what it means to deal, so they bravely say, 'I can handle it,' only to find out they can't. I get really pissed off when they're not honest enough, or able to say 'I thought I could, but I can't.' However, I do understand why that happens. Nobody wants to admit they don't want to be with you because of something you can't control.

And to end on a cheery note, sex makes endorphins, endorphins ease the pain. And I'm incredibly flexible. :)

LovingRadiance 10-29-2012 03:07 AM

November-on that note, I had an interesting experience last week. My ex of 15 yrs ago needed a friend. I went and hung out. He was talking to me about chronic pain (bone spurs in spine pressing towards spinal cord) that he is 2 years into dealing with.
I empathized, reminding him that I have neck damage from years ago. I had an ACDF surgery in 2010 which helped, but can't fix the nerve damage and doesn't completely alleviate the pain. So pain management is a huge part of my life-the last 7 yrs or so.
Previously-noone in my life had a clue the struggle emotionally. Now, he does and after my show of empathy-I saw the dawning comprehension on his face. Suddenly realizing how often he had glossed over what he didn't understand but now does.
I felt sad for him. I would rather he not understand. But, it was nice to be able to talk to someone who really grasps my struggle also.

SearchingforMyself 10-29-2012 03:14 AM

Quote:

Originally Posted by NovemberRain (Post 162418)
It could be this thread. :)

I am one of the invisibly disabled. ... Sometimes I limp, and I walk slowly (and not far); but pretty much, you cannot see any of my disability when you look at me.

When a normal person has an injury, they have pain, they take meds, they wait, they might do physical therapy; but they eventually get better. There is no getting better for what I have. There are good days and bad, and it's very difficult for people who don't have chronic pain to understand.

I tell people early, because I don't see any point in hiding it. If you can't deal, I'd just as soon you go before I get attached.

And to end on a cheery note, sex makes endorphins, endorphins ease the pain. And I'm incredibly flexible. :)

I think it should be this thread. :-) I'm also one of invisibly disabled - to the point where strangers have commented when they see me get out of my car when I park in a disabled spot. I have a chronic immune system condition called Systemic Lupus (SLE) in my spine as well as Fibromyalgia. I've had days where I was passed by an 80 year old woman who was using a walker. On the other hand, I have more good days than bad days. I have learned to live with my conditions and to thrive - I have a career that I love, a degree and an advanced professional designation. Oh, and I also have Bell's Palsy which has resulted in two years of very slow, and still not complete, recovery from partial facial paralysis.

My partners have all been "normal" and while some have left because, in part, they couldn't handle the bad days that I do have or the ramifications of my incurable condition, and some relationships have ended before they even started - it's a part of me and there isn't anything I can do to change it. It isn't easy and I'm always looking for advice on how to better educate people and remind them that just because someone has a disability it doesn't mean they are worth less.

And yes, sex can make some serious endorphins. :D

Quote:

Originally Posted by nondy2 (Post 162041)
I think I'm just less interested in (?) sex than she is and don't see life through a sexual lens...

On another note, I wonder if this is how my metamour J sees me.... I call her the "pretty lady" and she calls me the "sexy lady"

nondy2 11-10-2012 09:06 PM

Thanks for responding. I have a very visual disability, cerebral palsy. I have an akward gait and what is called a cp "accent." I am also a disability activist and liken my own disability to genes or race as I was born with it, it is the only body that I have known and I am happy with it. I find though the disability right community is very divided because everyone views their disability differently, depending on what it is and how it changes their body. For example, my friend with MS certainly did not want that, however, I am happy that I have cerebral palsy. I think it has deepened my life and it is simply who I am.

All of my lovers have been abled-bodied. I dated a few men with disabilities, but it simply didn't work out. I always had trouble with my own sexual empowerment until I turned 40, then I became incredibly empowered.

But I do have a question: On OK cupid, I tenf to get along better with the younger guys. Older guys have shy away when they learn I have a disability (often without even meeting me). I wonder if because of all the changes in gender and so on, the younger generation is more open-minded. I don't think I've had any trouble (in this area) with men under 30.

LilacViolin 11-11-2012 02:15 AM

Quote:

Originally Posted by NovemberRain (Post 162418)

I have a stupid genetic condition that makes my collagen broken, makes my ligaments loose (so my joints dislocate, all of them, at random), and provides me the joys of chronic pain. Sometimes I limp, and I walk slowly (and not far); but pretty much, you cannot see any of my disability when you look at me.

And to end on a cheery note, sex makes endorphins, endorphins ease the pain. And I'm incredibly flexible. :)

Hey, me too! :D

My hips are the worst, and I have an artificial hip. I face a lifetime of surgeries as the ligaments get worse and prevent me from being mobile. Chronic pain? yes. Pain meds? Not often. Flexibility? Ohhhh yes, and that can be awesome.

I think mental illness comes into play here too, at least in a different way. I have a mental illness and that can make my relationships have to pause for a bit while I get better. Tricky stuff.

NovemberRain 11-11-2012 04:21 AM

Yay! I'm always so encouraged when I'm not alone. :)

For educating folks, I do like Spoon Theory. I think it was mentioned in a different thread, but belongs in here, if people are searching for 'disability.' The gal who wrote it has lupus (I apologize for my ignorance, is SLE just one kind of lupus, are there others, or is it all SLE?).

http://www.butyoudontlooksick.com/ar...-spoon-theory/

CBF, while he doesn't really understand my disease, uses spoon theory to try to explain to other people. I got to link it to his boss, who has severe arthritis (and several other conditions). She took it to her HR department, and got many missed hours forgiven from her record.

nondy2, my men are over 30, but they are much younger than I am. I do think it makes a difference.
Oh, and sex parties? Don't do a thing for me. And have a very large sexual lens to life. I'm glad you gained some understanding with your metamour.

LR, when noobs join my facebook support groups, I often welcome them with 'glad you're here, sorry you're qualified.' I add to my self-esteem by knowing that even people I hate, and whom I wish would be sent to the bowels of hell; I do not wish chronic pain on anyone, not even them.

nondy2 11-11-2012 05:50 PM

OMG gosh! I think spoon theory is one of the best things I've ever read. I'm going to send it to a number of folks. In my own body, I can relate to this in small ways, for example, I live in a city and I have all the distances carefully memorized from point A to point B because I get tired and am constantly calculating how to get places with the least amount of steps- i.e. the least amount of energy.

What spoon theory doesn't go into is the effect that society has on people with disabilities from a view outside the body. The person uses a cane, so I'm sure people stare, or talk down to her, or sexually dismiss her. But I can only speak to my own experience. How many times have a had a waiter ask my husband for my order because they think I can't order for myself? How many times have guys disappeared off Okcupid when they find out I'm disabled? How many times have I been c allied retard on the train? Or had people express surprise that I have a child? A husband? A sex life? In disability, there is always a duel consideration: the impairment and the ridiculous reaction to it.

Hannahfluke 11-11-2012 07:29 PM

I have fibromyalgia as a result of being hit by a car 14 years ago while on a walk with my children. Thankfully nothing happened to them but I am disabled. I hate it. I hate feeling lazy because some days my full time job (which I have so we can have health insurance for under $1000 a month) drains all my energy. Most days I deal with it and am okay. I just wish it wasn't a fact of my life. I do take pain meds, because without them I can't function. My boyfriend and husband are incredibly understanding, so that's good. And I have very few level ten pain days anymore. Just thought I'd chime in that I also experience an invisible disability.


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