A theory of how to talk to other people about disability

[Kitty]

Socially I became experienced at turning the conversation away from myself and back on to them.

Very much so—but also steering it onto things where there is both shared interest and equality.

I do music, photography and wildlife surveying with different groups of people. We often have a laugh about tunes we just can't get on top of, or help each other with IDs, or what camera settings we use for something. Talk about things we'd like to do and places we'd like to go, or tell funny stories about how disastrously we once cocked something up. The stuff of normal friendships.

It almost sounds as if I spent time working up a strategy for navigating all this, but I didn't. I couldn't even have explained what I was doing in the way in the way I have here. It was just a natural inclination towards privacy, a tendency to look at things that make me uncomfortable from a social politics standpoint, and learning ways of dealing with things from other disabled people.

 

[bobbler]

I don't know where the right place to put this is because I don't want to ruin either of your threads. But the thread on how to talk to your friend (I don't know if this thread is private or the other one so keeping it 'general' in description) has brought up / confirmed that for me a lot of what I already knew but makes it stark

sadly the misinformation on cfs and the attitude of most, including many/most (?) of my older friends who should know better means that all my needs or disability that they find inconvenient they just gloss over like it is a delusion, and when I explain they need to stop doing x or I can't do y or what I desperately need(ed) help with to sort because there isn't support elsewhere for pwme that fits the task or because of bias in the system is just treated like they are being polite treating me like I'm in a delusion.

It's the thing I've found impossible and dehumanising. And like I'm put in a box in life of being 'managed' by most in a really unkind and limited way vs when I was prepared to fake it because I could (but at great cost in all sorts of ways of course). It is hard to describe the level of undermining and not existing that does, but also how much more unsafe and impossible to survive that has done to me. Decades of people thinking if they just ignore what I've said, which is actually my needs, the issue will go away or I'll find a way to get it sorted even though I'm the type that wouldn't ever have mentioned it if it wasn't desperate or I hadn't errantly thought they were better people than they turn out to be.

 

[T&O]

I don't know where the right place to put this is because I don't want to ruin either of your threads. But the thread on how to talk to your friend (I don't know if this thread is private or the other one so keeping it 'general' in description) has brought up / confirmed that for me a lot of what I already knew but makes it stark

sadly the misinformation on cfs and the attitude of most, including many/most (?) of my older friends who should know better means that all my needs or disability that they find inconvenient they just gloss over like it is a delusion, and when I explain they need to stop doing x or I can't do y or what I desperately need(ed) help with to sort because there isn't support elsewhere for pwme that fits the task or because of bias in the system is just treated like they are being polite treating me like I'm in a delusion.

It's the thing I've found impossible and dehumanising. And like I'm put in a box in life of being 'managed' by most in a really unkind and limited way vs when I was prepared to fake it because I could. It is hard to describe the level of undermining and not existing that does, but also how much more unsafe and impossible to survive that has done to me. Decades of people thinking if they just ignore my needs the issue will go away or I'll find a way to get it sorted even though I'm the type that wouldn't ever have mentioned it if it wasn't desperate or I hadn't errantly thought they were better people than they turn out to be.

sorry bobbler, its a buggar isnt it.

 

[Hoopoe]

Decades of people thinking if they just ignore what I've said, which is actually my needs, the issue will go away or I'll find a way to get it sorted even though I'm the type that wouldn't ever have mentioned it if it wasn't desperate or I hadn't errantly thought they were better people than they turn out to be.

Your comments fits well into this thread.

I experienced a similar attitude by family.

My father is a doctor who attempted a management strategy recommended in some books for somatization disorder. This involves intentionally not taking the complaints seriously because that is expected to lead to a resolution of the complaints.

Other family members reacted with denial and idealization, adopting a narrative that I was capable, but just temporarily embarassed for some obscure psychological reason.

It felt like my experience of being powerless was not allowed to be real.

In the end I felt like society did not accept it when I said I could not function, tried to push me towards behaving normally either through motivational talk or punishment, and then punished me for trying my best and still not succeeding. At some point I stopped trying. Then for them I became a person that for no valid reason had just decided to do nothing with their life.

This led to many years of avoidable dysfunction and continues to affect my relationships to this day.

 

[Hoopoe]

My tendency to overshare information about the disability alternates with hiding the disability. The hiding (masking) is stressful and that leads to a desire to instead do the exact opposite. That desire accumulates and then manifests occasionally as oversharing.

 

[shak8]

When I told my medical-journalist father in 1996 that I was diagnosed with FM (I waited several months before telling him), his told me that my FM was psychogenic per a NYTimes article quoting a surgeon**-author who said it was.

**Memo to self: surgeons aren't neurologists or rheumatologists.

My father never apologized and and never said another word about my illness to me. My mother said once toward the end of her life that she felt sorry that I suffered with FM.

A sibling said recently that she was surprised that a muscle relaxant lessened my FM pain (because she believed it was psychogenic, I assume). I have heard a lot of statements like my sister's over the years. They hurt like a backstabbing rumor.

One son, the one with a science degree, forbids me from mentioning any FM symptoms at any time. He won't tolerate it--he has his own family's issues which put him into overload.

Most people you meet casually don't want to absorb your illness information, or just can't.

Even certain close friends may have limits (due to mindsets/social conditioning)--I told one friend who moved that I wasn't able to drive to her house 40 minutes away. I told another friend that I couldn't set up a date and keep it. My FM had worsened. I tried to explain this in detail, as well as offer alternatives, but they didn't get it. I lost them as friends.


I don't expect 95% of the people I meet or have known to offer up any meaningful comprehension or empathy. That said, I do bring up the word fibromyalgia to educate others by at least saying the word out loud.

I've written short statements to use in difficult situations. Practiced saying them aloud. Written them down and carried them around. Humor is key. "What do you do?" So many funny answers possible. Or you're exploring jobs that are more to your liking.

Though I long to be seen as a "normal" as well as feel my pre-illness self, too, and I innately desire this throughout the day, and it's almost unconsciouly directing my behavior and thoughts, I am convinced that finding a longterm romantic partner means finding someone with a disability. Someone who "gets it" instantly. And another key quality for me is someone who makes me laugh.

Re: friendships worth it. This week I met a woman at my oak park. It was her dog's intelligent and unusually sensitive expression that made me strike up a conversation with her. She is a disabled therapist (severe Meuniere's disease) with a great sense of humor and a story-teller. She gave me her address....she sits out front most days until noon and would gladly walk with me.

This suits me: I can't make social appointments. She's very interesting to me.

What most people want in a casual social interaction is to be made to feel better because of it. This means keeping things light, humorous. Complementing them, showing interest in them. If I start talking about my FM symptoms (which is natural for me to do on a high-symptom day) I am taxing them. Those days I can't form sentences well anyway.

People want to keep their illusions intact. They don't like to hear the disruptive truth about disability. Dogs and cats are without these illusions, it seems.

 

[bobbler]

My tendency to overshare information about the disability alternates with hiding the disability. The hiding (masking) is stressful and that leads to a desire to instead do the exact opposite. That desire accumulates and then manifests occasionally as oversharing.

I relate to everything you have said but just don't have the same level of eloquence in finding the words and working out how to organise what I'm thinking and put it across, so I truly appreciate (and a little bit in awe of) how you do get it said so neatly and in such an interesting to read way.

 

[Hoopoe]

It's just a description of what I think is the underlying psychological process. It seems to work like this:

A person that is newly disabled does not know how to have a positive relationship with another person that includes the disability (for reasons everyone here understands well).
If the disability can be hidden, the disabled person may learn how to hide it. That comes at a price of not being able to experience intimacy and authenthic relationships with those from whom the disability is hidden. It also takes a lot of energy and is stressful. Relationships and friendships may end.

The oversharing happens because of that deep underlying desire to drop the mask, find acceptance, trust, intimacy, authenticity. It is in part a test to see how the other person will react, in part a maybe unrealistic desire that comes out too strongly. It is not fundamentally bad, it's just not expressed well. Relaxing the masking and trying to not have unrealistically high hopes of acceptance from people with whom I don't yet have the level of closeness that would be appropriate is helpful.

This is also where my autism is a problem, because it makes it harder to know what level of closeness, trust, intimacy, I actually have with another person. It's the communication between my inner self and the other person that is difficult, if specific interpersonal skills are required, such as sensing how the other person is perceiving things. The autism can also be an advantage because it makes it harder to lie, manipulate, be insincere, have malicious intentions, etc. because these things are the dark side of the same category of specific interpersonal skills. Neurotypicals tend to appreciate or even admire some characteristics of the autism. Some are made uncomfortable by it though. It depends a lot on the person.