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

@catphone what support do you currently have? You mention a tutor? What are they helping you with? Have you any input from any other services other than the tutor and your GP?

I have autism and adhd, and physical disabilities. I have a cleaner and various "devices" in my home to help me that were recommended by an OT/physio.

@Bachboo,

You have read nothing what I have said and I haven’t been berating the op. I merely suggested that there may be some things they could do. I actually have a very close family member who needs to be in a specialist schooling environment but can’t get a placement due to lack of funding. This child can not go to mainstream schooling because there is no funding available which in my opinion is a crime. So what do you do with these children and young adults because there is not funding? They are not getting what they should in terms of funding for their education which all children legally should be receiving. My point is there is not enough to go around and unfortunately hard decisions have to be made whether you like it or not.

I don't think I am the only poster to view your posts in such a light.

I don't know what you do if you can't receive funding for your child. It's not my experience.

I referred my child myself for Statutory Assessment and received significant funding off the back of that. Later when it became apparent to me that my DC's school were using that individual funding to spend on other children and purposely not acknowledging my child's progression and attainment in order to cling onto that funding (long) story, I got the funding ceased and my DC's attainment was finally acknowledged it appeared to improve exponentially when it in fact was more gradual.

And as I said earlier my DC is in their final year at uni. No additional funding or support.

Maybe it is this kind of thing that drains resources.

OP I do wish you the very best I really do and I hope you do find some equilibrium in your life. If you enjoyed making your candles (I wouldn’t have a clue how to do it) do it for fun or gifts to friends or loved ones rather than the pressure of selling . You never know you could get commissions but just do it for fun.They’ll always be some scumbag who will just steal things and I’m sorry that happened to you. Good luck with it all.

Currently they're helping me with maths which I really struggle with and after that we can build on it.
I did mention the support I have in other comments.
It would help me to have a cleaner but I need to find something I can afford.
A lot of services aren't available like a personal assistant which is only available for the elderly who are bed bound in my area even though in other areas I would be entitled - but that's just what the lady at the council told me who answered the phone so I don't know if it's true and if I need to use an advocate.
when the dentist visited they asked me if I had one and others have too but as far as I'm aware it's not available and social services have to do things for me sometimes.

Can't you use your pip payment to fund a cleaner? That's what I do.

well no I can't use it all. whatever I get I largely use for essentials or just living my life, or things for hobbies.

OP - what you have been told by the council isn't true.

Here's a helpful web page regarding the Care Act 2014

It doesn't even sound to me like you had a care and support needs assessment, and legally a council cannot determine eligibility without completing one.

www.scie.org.uk/assessment-and-eligibility/determination-eligibility/

What do you mean you can't use all your PIP payment? Sorry, I'm confused.

PIP is supposed to be to help you to level the playing field due to your disability. If one of the things you struggle with is cleaning, then you should investigate hiring a cleaner and using the PIP to pay for that is all I meant.

I wouldn't call what you do "hobbies" if you're using it to regulate yourself? I do crafts but they're to help me to keep my hands mobile, for example. It's not really a "hobby" it has a therapeutic benefit - I assume you are the same?

I don't know if you get income from other things but I don't work at all so all my benefits essentially go on a basic standard of living with something to do so I'm not a vegetable.
I never thought of hobbies like that but yes I'd be very unwell mentally if I had no hobbies ever

I've already stated on this thread that I work?

I have been following this thread, and while I have my doubts about the sincerity of it, I must refute what you say here. There is enough money to go round, if the UK was to have to go to war right now, you better believe that the money will be there. The message has been put out loud, and clear about there not being enough money because of disabled people, some people with poor mental health not working, blah blah blah. The disabled are just low hanging fruit to place the blame on, for certain ills, in this Country.

what are your doubts

Too many to list@catphone , I would not wish to overwhelm you, or detract from your OP.

I don't think that's a fair question - if the poster was to answer that they would be accused of troll hunting surely?

I’m working either because actually working would fuck my life up uch more than living in disability benefits.

Ive done the working at all cost btw. But there is a point when you can’t push through more than you already have and you simply can’t work.
Its never as simple as ‘I work because I have no choice’ with the underlying assumption that if the OP/me/anyone who doesn’t work due to ill health wpuld manage if they really wanted to,

I do absolutely agree with this that there does seem to be some sort of tier system going on

She WAS capable.

I was capable too. I had a business, and MSc. It doesn’t mean I can work nowadays. Nor does it say anything about the OP capacity to work.
And yes, people who can’t work aren’t too stupid to hold a job. There are many other reasons why one can’t work.

They are troll hunting already though by implying that my post isn’t genuine.
I was developmentally behind others my age but I was only diagnosed when I was 10. I was bullied for being different. My mother was battling with herself over me being disabled or not and whilst knew there was something wrong with me didn’t want to accept it. I was non verbal and violent when smaller but got help outside school with my development that was privately funded which helped. I’m glad she didn’t give up on me. I had severe behavioural issues throughout my whole life that were blamed on my mental health or parenting. I was hospitalised for meltdowns and self injury and police called when I would run away. After my diagnoses I was home schooled. I could have gone to a specialist placement but it was too far away from home and there were some other reasons as well that I didn’t go.
any education or help I got after mainstream was privately funded at home so after I left home I’ve had to fight to get help from the council.
I feel like I’ve probably given too much information about myself away now partly because I’ve been getting interrogated on here and feel the need to defend myself

All of that has undoubtedly been very difficult for you and I am sorry you experienced that.

Have you considered counselling?

I’ve tried counselling and it doesn’t work for me. I think someone already asked me that before on this thread and I explained why

Apologies for missing it - I will search your posts now.

That notwithstanding, and before I do so, I would strongly suggest you try again and get a form of counselling that works for you - again, you can use your PIP to pay for it? There's various different types and lots of different providers and the right person with the right approach might take time to find.

There is no counselling that works for me. I do art therapy at home

What you said about counselling is this:

Talking therapy isnt suitable for me because I have an auditory processing disorder and need longer to absorb information. I found talking therapy exhausting for that reason.
They were supposed to be autism accessible, but they used a lot of eye contact, asked broad questions, and just generally made me uncomfortable. I think a lot of places don't really understand how to interact with an autistic person.
I'm finding art therapy the most useful, but I only recently began it and it's free on YouTube.
I only got a certain number of sessions, and after that I was expected to pay, and I couldn't afford it. They wanted the equivalent of half of my disability payment. I wouldnt have even if I could afford it because I didnt find it helpful

That just means that that particular form of counselling with that counsellor didn't work for you. It just means that you need to find the right approach for you, and yes, that is likely to be expensive - can you access anything via NHS services in your area?

It's good that art therapy is working for you, but I'm unsure how the efficacy of something that is free on youtube would be measured? My other concern is that you're heading to tribunal for your PIP and really you need evidence from professionals for this - and a generic youtube page won't really give you that?

@catphone I believe you and I'm sure many of the other posters on this thread do.

Any 'discrepancies/ inconsistencies' others think they are seeing, I think, are simply because your disabilities are complex. These disabilities impact and interrelate with each other and it would take much explanation and analysis to unpick on exactly what is going on. Which we certainly cannot do on a MN forum and many posters are unqualified to do this sufficiently in real life either.

So really don't waste your time attempting to defend yourself on here. Not least because it takes focus away from the positive things you can take from this thread.

You come across as an intelligent and thoughtful person despite the challenges and disabilities you have faced. Plus the more I hear the more I see that you are also hugely resilient!

So take stock and look towards some of the good things the future can potentially hold for you. 🙂

You only do art therapy via youtube - you're not engaging with a professional who can write a personalised report for you if I understand what you've written though? Could you find a person to do art therapy for you maybe over zoom or similar if you find face to face too difficult and who would then be able to write a report for you for your tribunal?