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

No, we just have to literally keep our families fed 🤷

Not everyone manages that. That is why some children are removed by Social Services. The parent/s can't cope.
The people like you, who do cope, are the most vocal.

I think you’ll find it’s the ones who ‘don’t cope’ who are most vocal 😅 funny how they have the energy to be all over social media about how unable they are…

I meant there are posts from people basically saying "I can cope, so you can".
Why does everything have to be a race to the bottom?

Well I can write online but I can't socialise in person without getting exhausted very quickly partly because of the auditory processing disorder and I'm more introverted. I have a special interest in birds. I can't really 'get out and about' because I get overwhelmed very easily by all the stimuli, am agoraphobic and rely on others to get me out the house every now and then and even then its to places where there arent really other people.
Because of the amount of disabilities/health conditions/mental health conditions I have it's created a really complicated situation where I feel like I'm so limited in what I could do, I'm not even sure I can work at all because I just feel so energy zapped by what I have to deal with but I still need energy to function and get through the day which I wouldnt have if I worked.
By burn out I mean, in a ball on the floor, can't think, can't speak, cant look after myself. Once I'm at that point I cant focus/concentrate and I need to get someone to come in and sort me out.

Okay so just own it. You speak confidently about your struggles and seem to be able to explain your issues and how you won’t ever work so I’m unsure what advice you even want?

Well as you say I know that others have the same disabilities as me but somehow get by and I really just don't know how because if I push through I get burnt out. I don't know what they mean when they say they just do it or just push through.
It's really impacting self esteem and I am ashamed that I can't cope with it all and can't support myself. It feels like there's something fundamentally wrong with me.
It's also really hard for me to deal with the judgement I just feel stuck. When you say just own it I don't know what you mean by that either it doesn't feel as simple as that

Clue is in the title of the OP. She feels shame for not being able to work, and wanted some advice on that. Instead, she has posts saying she should feel shame, and should be working, despite how that would impact her health.

This is the board for ND MN members, and yet the lack of understanding on here has been staggering.

I don’t see if like that. I see it as people trying to help someone understand that people can and do achieve things with similar conditions. OP’s opening post was extremely negative and of the belief she would never be able to live a normal life or function, so people with a variety of disabilities and conditions have come on to talk about how they’ve dealt with it.

It’s then up to OP to take that information and do what she wants with it. If she genuinely feels she can’t work, then that’s fine. But the whole point of her thread was about feeling down that she can’t work, so people were bound to try and offer her some help/suggestions/share their own experiences.

Maybe I’ve read the situation wrong.

OP, at the moment you are focused on what you cannot do, and your focus on your wellbeing seems to involve being more and more restricted in what you do. This is a typical anxiety type response but it is not sustainable and makes problems worse. You say that talk therapy/counselling did not work for you, but I wonder how much you had, whether it was with someone who really understands autism, and how open minded you were. You are likely to have very fixed ideas about yourself and life, and this fixedness is part of the problem. Often autistic people resist any kind of change, and since therapy is based on making changes, this can get really uncomfortable. But with someone who really understands the condition, you may be able to work out some ways to exist in the world which are manageable and which also give you a sense of pride and accomplishment. I hope it goes well for you.

This. Most other posters on here are ND. Some people on MN just love to be a victim, unfortunately. There’s been some amazing advice and explanations on here that the OP has chosen to ignore.

I wish there was a comprehensive handbook/manual for autism and coping as an adult

but they’ve explained how they do it, in great detail?

Sorry OP, I wish you well but at the moment you’re so consumed that you’re not listening to any advice you’ve asked for. I hope you get the help you need.

I'm not ignoring the advice I just don't understand it they're not being specific enough, them saying 'they just do it' isn't enough of an explanation for me.

None oftheir business. I don't work and am of employable age. My DC was diagnosed with additional needs and supported them through school, then I got a bad back then got cancer. I am through treatment and am in remission but am focussing fitness and health. I run a lot (6k) everyday and exercise. My husband is totally supportive.

I could get work I suppose but it would be pin money. And what cost with regards to my fitness and recovery regime? Could fit it in if absolutely necessary but I have a nice life as is. It might not be forever...

I think even a lot of NT people would like a handbook on how to cope with being an adult.
I hear you though. I can't cope either, and am in my 40s.

So op focus on your needs in the situation you are in. If things change consider changing..

And nearly everybody relies on other people in this life. You have to be pretty isolated not to.

No manual, but working with a therapist who understands autism is the closest thing. But you have to be open to accepting that part of your current difficulty is your outlook and be willing to accept that you may have to try some different things.

Maybe become a writer op. 🙂 there's loads of advice online as to how. And you can self publish and work to your own schedule.😉

Well they might recommend a routine (I already have one) but they don't say how they avoid falling out of that routine. They don't explain how they sustain it. They just say they push through without much elaboration. They think it's as simple as having a responsibility. But I have responsibilities.
I have so many things that are impacting my sleep schedule, which effects everything else. I already followed sleep hygiene advice but it doesn't work for me. I have bowel issues and PTSD and have nightmares that involve someone trying to kill me. My anxiety is just out of control. And it gets exasperated by overwhelm. It's just a loop, with everything effecting each other.

I would agree with this completely. But do get one who is experienced with autistic people.

If you do want to consider working there are a few charities offering mentoring to people with ASD who are quite successful in getting people into work. But you need to be in the mindset that you can do something, not that you can’t do something,

I was thinking about doing something like that but it would take a lot of time. It can just be a hobby. I write creatively currently but its private and in a journal

Who and where are these therapists? Lots of people are diagnosed and then left to it.
And lots are even denied an assessment because there is no actual support afterwards.