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

B.I.N.G.O.

Yeah that was my original question, but after they came on to say they have the same disabilities as me and work, I wanted to ask them how they manage to work. but all they say is that they “just do it” but that’s not a specific enough answer. I don’t think I can “just do it” because if I push myself too much then I can’t function at all anymore. I have tried the help that was available to me and I’m doing what I can to improve my situation, I was already doing a number of the things that were suggested to me. I already have a routine but fall out of it often due to dysregulation.
I have very limited energy levels. It’s true I feel terrible about myself. I feel like what I can manage isn’t enough. It just feels very shameful. Some posters have made me feel a bit better about myself and what I can do though. I just think I’m very negative about myself due to my mental health but that doesn’t change the fact that I don’t have the energy to work.

Love, you clearly are quite unable to work at this time with all those problems working against you. Don't let people shame you for that. In a way it's helpful that they are so upfront with their bigotry against disabled people, because at least you know those are the people you should avoid.

Maybe your health can improve and eventually you might be able to work, but no shame if you can't. Just continue to work on self care right now as you have been doing. ❤️

Yeah, I noticed that too. They give no explanation as to how they do it. It seems obvious that as they can and do work, they simply don't have as many problems as you do, or as severely as you do, so they would have no idea what to advise you to do.

Reported. I hardly ever report posts, but that was beyond cruel and ableist.

Start by reading this. https://the-art-of-autism.com/understanding-the-spectrum-a-comic-strip-explanation/ Not just the OP, all of you.

Autism affects different people in different ways. OP also has co-morbidities that most other autistic people don't have. Therefore it's reasonable that OP can't work and I can. Some autistic people can work without adjustments, others can only work if workplace adjustments are made, and others will never get out of nappies. People have a huge range of capabilities and impairments and some just can't work.

OP, your PIP entitlement and other benefits are assessed not just by what diagnosis you have but how it affects your ability to do routine tasks. Autistic people will remain a minority, albeit a slightly larger one, and some of us being able to work won't mean that all of us will be forced into jobs.

The people telling OP that work will make her life better should consider that what helps one person may harm another. Your uncritical, inflexible insistence that what disabled people need is jobs, regardless of their impairment is an attitude trained into you by the press on behalf of capitalists wanting a large reserve army of labour, supported by successive governments wanting to cut spending and not daring to touch the far bigger pensions bill. History tells us that governments that used this rhetoric tend to be very bad for disabled people.

I think they’re saying they have the impression that I’m choosing not to work, they think I’m not doing enough or improving myself enough to work now or get better enough to and using my disabilities and conditions as an excuse if that makes sense.
but still no one can explain to me exactly how they manage to work with the same disabilities and co-morbidities.

With respect OP I don't think anyone is saying they have the exact same disabilities as you. I think (most) people are trying to offer you advice and are basically saying that they have experienced struggling with life themselves at times. People have different ways of coping and getting through the day but sometimes it's not easy to put this into words. When it comes down to it if you do want to work you are the only person that can facilitate that for yourself. That may not be possible due to your situation and that's entirely your business.

Also, your original question of how to cope with the shame of not working. No one can stop you feeling shame or embarrassed that too can only come from within. I'm wary of trying to give advice now because of the way this thread is going so instead I'll tell you my feelings. I don't explain myself to other people and my life and how I live it is nobody's business but mine and my husband's. I certainly don't loose sleep over what my neighbors think of me.

You won't find solutions on online chat OP and in fact it's probably making things worse. I know it's hard to see through the fog but remember your struggles and conditions are not what defines you. Don't let your life turn into endless referrals, assessments and GP appointments.

Work can be scary if had a big gap out of the work place. I have similar issues to yourself and struggle every day but find it more of a struggle not working (feel hopeless, money issues etc).
A large proportion of my colleagues are ND or have severe MH issues and we get a lot of support in work. Days off are more enjoyable than being at home every day.

I work PT to manage which helps, I retrained to make this possible as couldn't if it was low paid.
Could you volunteer or study to.get some confidence back? Working from home?

I’m not sure what OP wants us to say. How I work? As in how do I get out of bed in the morning and go to work?
What explanation do you/OP want? As I said before, it’s an entirely different situation. How I work now after 20 years of working is not going to help OP at all.

Thats why I suggested she start small- volunteer for a morning or two a week and then she has the rest of the week to recover. I HAVE offered ideas, but OP is choosing to ignore/pretend I haven’t. There is no magic formula. I used to do a days work and collapse into bed for a few hours, then have to get up and sort a yard of horses out. Weekends were spent unwell in bed with my illness, because I’d worn myself out, but that was just the way it was. Monday I would drag myself back to work and start again because I have mouths to feed.

If OP wants to know the impact it has on my life- I don’t have nights out as my body is worn out by then, I’m in bed by 7pm (albeit not asleep) every night, I am on a cocktail of drugs to survive, I have days where I feel so unbelievably ill that I wonder what the point of it all is, I often have to cancel plans with people if I’m unwell, I live in constant pain… so yes, my life is so easy, isn’t it? I’ve been on antidepressants for 23 years. I was a self-harmer. At one point my panic disorder was so bad that it ruled my life. I used to drive to uni in the throes of an anxiety attack, crying. But what do I know?

People are talking about how judgemental everyone is being about the OP, but the judgement from people about us who work is staggering. Just because we manage to function and keep going does not mean we are ‘less unwell’. We just have different priorities/different life experiences/upbringings/responsibilities.

Ime most people don’t really care about others - they care about those close to themselves. If a neighbour does or doesn’t work it’s irrelevant to their lives. So I would say ignore anything said or hinted at it’s not worth giving it headspace. I’m pretty sure they aren’t.

How is this remotely helpful to OP?

What absolutely ridiculous comment.

She doesn't want to give that information.

• Enicks86 How old are you OP?

I dont feel comfortable giving identifying information*

In the UK with 68m ppl your age won't identify you any more than all the other details.

Why?

You think that telling someone to 'try harder' is helpful?

It was facetious.

OP I have reported too which I don’t normally do either. I’m sorry that the ND MNers area seems to have be a place where a ND MNer isn’t free to speak about her life without being piled on. This whole site is meant to be about support.

People who don't want to engage in detail and do want to get aggressive in their posting are free to go over to AIBU and have at it

Did you really not get that I wasn't asking for your opinion?

The problem is this board was opened up to active, in good faith, and this is the result.

OK.
I honestly didn't get that from your post.
We agree then that being told to try harder is no help whatsoever?