How to deal with the shame of not working

[catphone]

I am autistic with hyper mobility and an auditory processing disorder and likely have CPTSD. I get stress induced migraines, stomach issues that cause me to faint and inflammation. My periods are extremely painful. I also get emotionally dysregulated regularly. My sleep is terrible and I am prone to burn out. I can usually just about manage the basics but anything more than that and I start to malfunction and my autistic symptoms become more pronounced. I need to live a very simple life with next to no stress (which isn’t realistic). This year I want to focus on my mental wellbeing. I don’t know if I’ve just been through too much in life to ever work.
I volunteer online but even that is too much. If I had any sort of job I would burn out.
I know that everyone has problems but I don’t know how I could work. I feel ashamed that I can’t. I don’t know if I’m making excuses because others seem to manage somehow.
I’ve had judgement from well meaning neighbours who are otherwise very nice that I don’t work and how I must have a lot of spare time. Another person (unrelated) said my whole life is spare time.He had a suspected heart attack the other month, collapsed, and it turned out to be something else but he was still back to work shortly after spending days in hospital. I see what he’s saying but he doesn’t know that my life is a bit like living with an illness most of the time. I’m not sure how realistic this is but I’m worried I will have to work at some point because of the unsustainable rise in autism cases and they might make it impossible to claim for if most people have it. I have terrible anxiety about this in particular it feels like it’s just a matter of time and I feel a sense of doom

It only seems to happen with hidden disabilities, the message being ‘we don’t really think you’re that disabled…so just try harder’. No one is saying that to a sight impaired person are they? Just try to see more! And then justifying it by saying ‘well I’m also sight impaired…’. There are variations in how severely a disability affects you and in what ways, but people don’t seem to get that. They cope, others cope, therefore she’s faking it or ‘not trying hard enough’.

It is a neurodiverse board. Autism has social communication difficulties as a key diagnostic criteria. So it's very possible that some people will struggle to pick up sarcasm or being facetious etc on this particular board.

I was the one who didn't get that the post was facetious, so am aware.

I agree.
There's horrible ableism on this thread.

I was trying to reply to the person who was surprised but messed it up somehow.
Sorry.

thank you I didn’t know that. I don’t want to digress too far from OP and the ableism issue but didn’t realise this board was not previously visible in active. I didn’t even remember that there was an ND MNers board before. not sure I would have found it otherwise.

I’m glad I saw this thread, but am conscious this board isn’t intended for me either, I am a parent of a ND DC with several ND relatives. I just saw it in active.
Thank you to the mods who have responded

I didn’t even remember that there was an ND MNers board before. not sure I would have found it otherwise.

That’s why it was opened up to active, it was a bit of a ghost town that everyone forgot about or had no idea existed. But unfortunately there is so much ableism out there.

OP- I noticed you mentioned about a guide for autistic people. Do you enjoy writing?
How about writing about your experiences with your conditions? You might find it helpful to put it down on paper, it gives you a focus of something to do, and I’m sure there would be people interested in reading it (perhaps ND FB pages/online publications)

You could even write a blog about your journey and the problems you face. It’s fairly easy to set up nowadays and you don’t really need any computer skills if that’s not an area you are comfortable in.

But that sounds.. absolutely shit. What point are you making here?

Doesn't it occur to you that you deserve a better quality of life than that?

Retail work made me suicidal, to the point that I made an attempt at work. I do a different job now.

I used to drive to uni in the throes of an anxiety attack, crying.

Hand in your driving licence. You were not safe to drive in that state. That you consider doing so acceptable indicates that you still aren't responsible enough to drive. It's utterly irresponsible to put your own life and that of others at risk in that way.

The OP shouldn't have to endure a quality of life as bad as the one you describe. No one should. That's why we don't force people to work if it will harm them and we have workplace health and safety laws to protect people who can work.

I used to drive to uni in the throes of an anxiety attack, crying.

Translation: "I 'cope' by endangering my own life and the lives of others around me, including innocent children walking to school, and you should too".

Just NO. This is what the "useless eaters" and "arbeit macht frei" rhetoric does to people's sense of their own worth, others' worth, and inability to define their value other than as wage slaves.

Oh get lost. That was 20 years ago. I am through it now and live a full life, albeit with sacrifices due to the fact that I need the energy for working.
I was trying to make the point to the OP that people do deal with horrendous health issues and manage it successfully.
But maybe I should just go on benefits and sit depressed in my house. I run a business successfully, a yard, I have a lot of friends, an incredible family.. I’m doing great. But it wasn’t always this way.

I think there is a fundamental difference in thinking here. I also get what it’s like to make sacrifices in your personal life because you need to work. Others wouldn’t consider that an option.

I’m not sure the two mindsets will ever agree with each other.

I’m looking forward to having a life once I can retire. And before anyone else suggests benefits, as a single person under 55 with no children I don’t qualify for social housing (well, I could go on the list, but…) and even full disability benefits wouldn’t cover the rent on a 1 bed flat here. So OP has a privilege in choosing not to work that I can’t even imagine.

Driving when unfit to do so isn't ever an appropriate way to "deal with horrendous health issues" and shouldn't be touted as such. This shouldn't be even remotely controversial.

@selffellatingouroborosofhate

I think that was uncalled for and you've taken their post of out context sadly.

@Jifmicroliquid well done, and hats off to you for the sacrifices you had made. Also a fellow horse lover here too 🐴😁

Thank you. I’m genuinely flabbergasted that people are being so vile about the fact that I manage my illness and ASD by working, and have admitted that I went through some pretty dark times to get here. It seems that resilience and sheer grit aren’t traits to be respected anymore, and that if you’re not struggling to manage your ND, you’re not worthy. It really is a race to the bottom in society nowadays isn’t it?

But perhaps you’re right, there’s two different mindsets here and they are never going to agree. I suppose I thought the whole point of a discussion forum was to discuss, not just pat the OP on the head and say “there, there”.
But perhaps I read the room wrong. I am autistic, after all.

You’ve purposefully chosen a minor point and taken it out of context, which says it all.
I was not unfit to drive, I was crying. People drive when crying every day of the week.

I get panic attacks which overwhelm me, amplify all my senses and convince me I’m dying. I lose control over myself and can’t think anymore. I don’t think that’s comparable to an anxiety attack, which I can ground myself out of, unless you meant a panic attack in which case I don’t know how you did that either.
my anxiety if severe enough effects my nervous system massively and I get inflammation and severe IBS leading to dehydration and fainting.
a painful period that comes every 3 weeks and makes me bed bound with ibuprofen unable to move much is a reason I can’t work. I get a family member to come in and help me sometimes with food then.
I need a week to recover from having someone over. I think what someone else said is true, I suspect my disability affects me more than yours and that’s how you could push through

even full disability benefits wouldn’t cover the rent on a 1 bed flat here

Sacrifices I make to pay my bills in a job that won't kill me and allows enough energy for hobbies:

1. Not living in London.
2. Not living in a naice area.
3. Fifteen year old car.
4. No foreign holidays.
5. No nail art, waxing, tanning etc.
6. No meals out and takeaways less than once per month.

I've met several people who, having acquired a disability whilst living in the south-east, had to move hundreds of miles to a cheaper region to be able to afford to live.

Being able to live somewhere that has high housing costs is, to me, a privilege that I can't even imagine.

1. Not living in London.
2. Not living in a naice area.
3. Fifteen year old car.
4. No foreign holidays.
5. No nail art, waxing, tanning etc.
6. No meals out and takeaways less than once per month.

My car isn’t quite 15 years old (though it’s certainly not new), but I don’t do / have any of those either.

I wish you well OP. I’m genuinely not here to have a race to the bottom. You don’t know my life and I don’t know yours. There’s no point trying to decide who is worse off. I genuinely was trying to give you hope that things can change. Perhaps I misread the room.
I was on sedatives in my early twenties for severe panic attacks, it might be worth seeing your GP about that. I’d also try and get your IBS investigated as it might actually be something more than IBS that can be helped with medication (I know a few people who’ve been fobbed off with IBS and it’s been something else)

Take care x

But, like I said, different mindsets. You prioritise hobbies. I prioritise living in the area I grew up in and am familiar with - which means I have to work and earn enough to pay full bills.

(edit: that was in response to @selffellatingouroborosofhate)

You weren't just crying, you were suffering an anxiety attack. That's way more than just crying. Source: personal experience.

It's not a minor point because driving is a safety-critical activity. I've understood the context perfectly: you were driving whilst unfit to do so and mentioned this as an example of how you've pushed yourself in the past on a thread where you have suggested that the OP push herself.

You have said in another post "It really is a race to the bottom in society nowadays isn’t it?" Yes, yes it is. It is a race to the bottom on this thread to see how much of one's health, energy, and time one can sacrifice to the gods of capitalism to be a good little worker bee and make profit for the bosses, hiding behind a figleaf of "work is good for you" absolutism. Work is good for some people, but there are some people that work is not good for and that's OK.