Disabled Folks

nondy2

New member
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.
 
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.
 
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. :)
 
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.
 
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

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"
 
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.
 
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.
 
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/articles/written-by-christine/the-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.
 
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.
 
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.
 
The person uses a cane, so I'm sure people stare, or talk down to her, or sexually dismiss her. 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.

I'm sorry, but people are freaking assholes.

I have a cane, a walker, crutches, a boot - you name it. I probably use one, hmmm, a third of my life. And I'm so very lucky not to use it more than that. My partner and girlfriend are both supportive and tender with me, but sometimes I just want to have a normal sex life. Loving is awesome, but there are times that my needs for the passionate rougher sex aren't met. Careful is great, but let me be in charge of my comfort and pain levels.
 
Liliac,

Have you had any bad experiences with people putting you down or not hiring you because of the cane? If so, how do you deal with it?
 
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?).

The Spoon Theory is amazing. I use it all the time to explain how I have to structure my life sometimes.... There are actualy two main kinds of lupus. there is Discoid Lupus which only affects the skin and Systemic Lupus Erythema-something - I can never remember how to spell the last part of it - which affects basically anything else. SLE can affect kidneys, eyes, brain, spine, basically any type of cell in your body.

My partner and girlfriend are both supportive and tender with me, but sometimes I just want to have a normal sex life. Loving is awesome, but there are times that my needs for the passionate rougher sex aren't met. Careful is great, but let me be in charge of my comfort and pain levels.

I usually seem to have the opposite issue. My ex seemed to think that since I have figured out how to live with pain, that he could be as rough as he wanted whenever he wanted.
 
Liliac,

Have you had any bad experiences with people putting you down or not hiring you because of the cane? If so, how do you deal with it?

No blatant discrimination, as this is illegal and I think most people are aware of that. I've had to fight a lot for accommodations, especially since my disability seems to come and go. I haven't been in the job market for four years though, so I don't know how things would go since the economy is down a bit.

I've had people put me down because of my disability, for sure. I think the most painful is when people don't believe that I have the injuries. Also, I have hip displaysia which is mostly linked to big dogs. Nothing like having your disability compared to the pain that the dog felt when it jumped into the bed.
 
Unfortunately, the illegality (ADA) of not hiring hasn't done anything for me. I've been turned down for about 50/60 jobs in my life because of discrimination. Sometimes it was blatant. Sometimes not.

I wanted to be a kindergarten teacher very badly. I bond well with kids. I was chosen to be in a program in NYC schools that taught teachers and gave them jobs. Half-way through the program I waS asked to leave because of my disability. The excuse was that I would not 'be able to model appropriate handwriting for young children." I was also told by one of my classmates who I turned to empathy for that she would NOT want me to be her child's teacher. I was put in high school English teaching and had tons of prejudice there too, but did get to teach.

The problem with the ADA that I found out in applying for a job at BreaD and Circus in Cambridge MA is that they can get away with it, if they offer you a different job. AT B and C I was told that I could not work the vitamin counter because people "wouldn't understand my speech" but they would be happy to offer me a job in the stock room. In my interview they 'tested' my speech and had a second employee who clearly understood me but said she didn't! O what I have been through! Ironically, I ended up working customer service for a world class museum. Evidently, yuppies could not understand me, but high society ladies, curators, and artists could. go figure!
 
Wow, I'm so glad I stumbled across this thread. Not only have I not read the Spoon Theory before and found it interesting, it's very thought provoking.

I also have invisible disabilities, nothing life threatening or needing of surgery, but so many little things. The main one however is the fact I have depression, officially diagnosed at 14 as Dysthymia. Unfortunately Dysthymia is classified as the less extreme of depression diagnosis and even people with depression often misunderstand it. Even though people with Dysthymia do not often have the radical mood changes, your mood is still low. It is rare to experience a 'high' or any great amount of happiness. Every day is a low for example and rarely have a sense of hope.

Beyond that, I've also been diagnosed with scoliosis, genu vulga and recurring tendonitis of both wrists, and I've been told the doctor thinks my random and serious ice pick headaches are due to a pinched nerve in my neck. There's a possibility of more, but unfortunately my doctor isn't one who listens and just tries to cure the symptoms rather then find the cause.

Leading to of course problems with weight, exercise and being able to do a lot of things, and definitely problems in relationships as most everyone I've been with doesn't understand this.

Even my husband of 7 years doesn't understand it, even tho he is fairly supportive, but I know that sometimes he's still resentful that I can't help out with chores most days. Nor does he understand the despair that comes with wanting to be useful and able to work but being unable to because you can't deal with people constantly.

So I'm very glad that this thread is here, it's rather relieving to know of others with similar problems due to disabilities.

Part of what's made me smile reading a lot of this is seeing how people here are not overly bitter, and say that they'd rather not have anyone else be able to understand... as nice as it is to have others do. It shows a wonderful strength, and reaffirms my personal beliefs.
 
Troubled Tigress,

Thank you so much for writing this. I think it's great when people come out about invisible disabilities because it makes disability in general less of a shameful issue. I can totally understand being in a situation where my emotional life, to some degree influences my daily existence.

I was wondering what you meant by not needing people to understand?

There is a great new book on disability by Andrew Solomon called Far From the Tree. It's imperfect, but overall he has the right idea and the book is sensitive and loving. The primary idea of the book is resilience and how people who are (at some point) ableist and want a perfect child, end up with an autistic child or a severely disabled child, and how they end up loving this child and changing completely. It's wonderful!
 
Perhaps one day it'll be looked at with less shame to have a disability, which is certainly a wish of mine, as that alone can be something that makes things worse to deal with it. It's not like most people did anything to deserve it.

As for not needing to understand, I don't see where I used that wording, but I'm thinking you might mean the last part that I had said, about rather not having others be able to understand. I think I didn't word that as well as I could have now that I reread it XD

What I meant, was not wishing it on others to be able to understand through firsthand experience. Not wanting other people to go through the pain and problems that come along with having such things.

Thanks so much for the reference, I'll have to keep it in mind^^
 
I could be wrong, but I think when TT said this:

Part of what's made me smile reading a lot of this is seeing how people here are not overly bitter, and say that they'd rather not have anyone else be able to understand... as nice as it is to have others do. It shows a wonderful strength, and reaffirms my personal beliefs.

I think she was directly referring to this (emphasis mine):

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.

(two is my max ability to quote!) I think I might have referred indirectly to this, but if I didn't, I often do. When I welcome people to any of my fb groups for people with my condition, I usually include something like 'glad you found us, sorry you qualify.' I've been in chronic pain long enough, and invisibly challenged long enough, that I really do understand why 'normies' don't get it. 'getting' chronic pain is something no one should have to do. It is good to have others who do, but I don't expect normies to ever truly understand. I appreciate the ones who are compassionate enough to try.
 
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