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

But lots of us with autism do work OP. I’m autistic and work. I also have ADHD, EDS and anxiety. It was never an option for me not to work and now I could potentially not work due to my DHs income but I’m now used to the routine of working and whilst I do find it very hard and I’m struggling hugely with the amount of responsibility at work and at home at the moment with the kids schools routine, I actually struggle more when I’m at home by myself not having that routine. You also have to remember that ASD and other conditions are a spectrum, not everyone is affected in the same way and has different struggles. Yes at some point the government is likely to make it harder to claim benefits for ASD and other things, but there will always be that safety net for those who genuinely can’t work. People with ASD don’t all fall into that box of definitely can’t work but there are some that do.

I have autism and a chronic health condition. I have previously suffered from anxiety and I have been on antidepressants for over 20 years. I have always worked in some capacity because it was drilled into me from a young age that it’s my responsibility to manage my conditions in order to lead a normal life. I have a full-time business and run a livery yard. Life can be tough, but I have bills to pay.
Ive had to work exceptionally hard to manage my conditions.

Reading your opening post, you are very defeatist. It’s like you have already decided you can’t do any job because of this, this and this reason. Sometimes we have to overcome things as best we can. Can you pick up a part-time job with as minimal stress as possible? Maybe in a little local shop? You need to start facing some of your issues and working out ways to deal with them, rather than just allowing them to rule your life.
You get one chance at life. You have to do the best with the cards you’ve been dealt.

Another one here with autism and ADHD. Kindly, OP, if you are only looking for the reasons why you can’t work/whatever else, you’ll find them. You’re highly anxious and it’s understandably affecting your thinking.

It’s great that you’re good with animals. Think about what steps you could take incrementally to do more with that - pet sitting or dog walking are the obvious ones. Yes, pets poo/smell but you are resilient enough to anticipate and cope with that, ie pick up the poo and get on with your day.

I think your current situation is leading you to ruminate and feel isolated over and above just your diagnoses.

Can you volunteer in a charity shop. You don't have to be people facing.
There are several people with autistic traits where I volunteer (including me). They can't get jobs through the job centre for various reasons and are sent here to get some experience. And enjoy the work, also where I am you can volunteer for as much or little a you want. But it's best if you go in regularly as there is a rota.

Feeling shame isn't going to solve anything. If you want to make changes you need to sit down and list what you want to do - short term aims, longer aims, sources of support etc.

OP sorry I have not read the whole thread but from what I understand even not working is making you stressed.

Get back to your doctors and get your medication sorted.

Personally I think you just haven't found your job yet. You say, you can't work with animals because of the smells... have you tried? Can you volunteer for a rescue charity?
You say you don't like computers. Are you computer literature? Can you take a course to learn? It's not rocket science, and you could have your little business back by selling online. (You are also using & posting on MN - so you are half way there!)
There are also a lot of charities out there who could help you out with a volunteer position from a little bit of admin to helping people. I used help a small local one one out by listening more valuable donations on eBay for auctions... This has actually turned into a paid job for another, bigger charity.

You just need to get yourself out there, find out what you like and what you can put up with.

I've always had terrible anxiety around work , I've had stretches on anxiety meds, coinselling, CBT... but always worked full time as needed the money. However due to a physical health condition I'm now unable to work much at all. But I' was alrready in a job I can do flexibly from home so I just do 2 mornings a week. I think it's good to keep a bit of structure, contact with colleagues, sense of purpose, the satisfaction of earning a bit of money for myself.

In your case, sod what anyone else thinks. If you teally can't work then you can't work

However, I would focus on finding something you can do. It could really help your self esteem. Start small. Half a day a week even. Rding schools need volunteers for their disabled riding sessions, animal sanctuaries and rescues are often crying out for both volunteers and paid workers, you could start dog walking or pet sitting.

In the meantime, be really proactive in getting support wuth your health issues No one should be suffering so badly with their periods, for example I used to, but the merina coil completely resolved my issues.

Good luck!

I know. I'm reading the thread wondering if the op wanted to be analysed, advised, picked apart and "fixed". 😕

It does sound like it's the mental and physical health - not the autism - that is preventing you from working.
Routine, going out, and doing small things that make you anxious are all ways to help your mental health, which CAN be helped.

I feel a sense of impending doom that the autistic community is becoming the majority and I don’t know how/if it can be supported if most of us don’t work.

Please Don’t use medical buzz words like “impending doom” to justify yourself. This is absolutely not what impending doom means. Impending doom is an inner, unshakeable terror that something life threatening is about to
happen. What you feel is panic that your benefits might be taken away.

Op, I haven’t seen one reason in any of your posts why you can’t work. Autism isn’t a reason, anxiety isn’t a reason, agoraphobia isn’t a reason, painful periods is absolutely, unequivocally not a reason.
You simply don’t want to work, and are finding ways to justify it. Nobody here can convince you to work if you’ve long ago decided not to.
But if you really want to make something of your life and get yourself out of the benefits hole, then you could.
I work. Full time. I have crippling anxiety, MS, degenerative disc disease, dysmenorrhea, endometriosis… and I’ve worked full time since I was 16. I’m in my 40s now. My best mate at work has autism and adhd, she’s also always worked full time.
My point is, you make choices in life. You made yours a long time ago, going back as far as school. There is no way anyone here is going to convince you to make different choices. But you may be forced to rethink if there’s another benefits shakeup.
Autism is a magic word at the moment, but the reality is, only a very small percentage of people with autism have it severe enough for it to be impossible for them to work. You’re not one of them, not if you’re capable of looking after yourself and writing lengthy, legible posts on the internet.
You made a choice, either accept it, or make different choices

You’ve been allowed to opt out of normal life and responsibilities and I don’t think it’s done you any favours.

if there was no government income, what would you do? Would you really live on the streets and starve? Or would you find something you could do?

OP please dont listen to judgy posts you are living with pain and that’s not compatible with work. Every person is built differently and physically experiences life in different ways that’s what some people fail to understand.

So please follow up more with your GP and try to get better support for your health issues. And as you sound emotionally low, please consider what others have been suggesting about increasing your contact with animals. Just give it a try and take it from there. Good luck it is brave to try new things especially if you’re not feeling well a lot of the time.

Autism is a magic word at the moment, but the reality is, only a very small percentage of people with autism have it severe enough for it to be impossible for them to work.

No, the reality is that over 2/3 of Autistic people in the UK are unemployed. Why do you think this is?

The ableism all over this thread is ridiculous.

Why don't you suggest a few jobs that would work and employers that are good with autism.

I dont have autism and I do work, but none of my jobs have been equivalent to looking after myself and writing a legible post on mumsnet. I'd bloody love to be paid for doing that..

Very unsure how you’ve misunderstood the last sentence to such an extent 🤣 I did not intimate there are jobs equivalent to writing posts on the internet. I stated her autism isn’t severe because she’s capable of these things.
Someone with level 3 autism, would not be.

A lot of us could find excuses or reasons not to work. Autism, ADHD, chronic health problems, ongoing pain, stress, depression, anxiety… I’d hazard a guess that a large number of folk out there working and living their lives are battled something significant that impacts their ability to function. Perhaps even multiple things. Life is blimmin’ tough. It’s easy to look at people who seem to be coping with life and thinking they are lucky to not have any problems to deal with, but the reality is that many do. But they have had to make a decision to push through and find a way that works for them because they have bills to pay.

The OP has clearly had problems since her schooldays and that has had a huge influence on how she views everything. She has already got herself thinking she can’t do certain jobs because she can’t cope with such and such.

She needs to reframe her thinking. If she likes animals, see if any local animal charities need a volunteer? We have a hedgehog rescue near us who ask for people to dedicate even just a couple of hours a week. Finding something like that would be a way of helping OP get out of the house, engaging with other people and starting to realise that she is capable. Sometimes you get opportunities come along that you didn’t expect, but nothings going to happen if she continues to just sit in the house feeling sad about her life.
Don’t go to your grave feeling bitter about the life you’ve been given OP, make the very best of it. We only get one shot.

Get your adhd in check - most likely contributing to your other mh conditions.
Redo gcse maths and English. Then do an admin course

Remember thoughts affect feelings feelings affect behaviour and how we behave affects us physically

Some of the posts on this thread are appalling and show exactly the struggle that people with disabilities/long term health conditions face.

The OP is not here to justify herself to the pack of hyenas who always appear when anyone has the courage to talk openly about how difficult and isolating it can be to leave with such conditions.

I assume the people commenting know sod all about autism as they believe the nonsense that everything would be fixed if only she tried a bit harder...

Frankly, OP this thread shows that the best way to live is to stop concerning yourself about other people's opinions. As long as you make sure that you have all the medical testing, support and treatment that you can access, then all you can do is live your life. Your value in life is not define by a job and you don't have to justify your existence to anyone.

As someone with autism and another long term health condition, I have found it hard to find and maintain work over the years. Very few employers are supportive of people with disabilities/mental health issues. I also had to take breaks from work to have several surgeries and for recovery time which can make it hard to keep a job and then lead to gaps in my CV. Nothing I can do about it.

These days I acknowledge my limitations and do what I can do without forcing myself to conform to ableist views. I work part-time from home. If anyone has a problem with that, it is their issue, not mine.

I do wonder if there were no benefits, just how quickly some people, including the OP, would then suddenly be able to work. There are people posting here that manage it, despite being incredibly ill.

The empathy is astounding.

Less than the number who would die on the streets or by their own hand.

https://www.disabilityrightsuk.org/news/2021/may/82-benefit-claimants-have-died-after-some-alleged-dwp-activity-such-termination

For the people who think that lack of benefits will suddenly make people ‘able’

Not everyone’s struggles are the same and given that OP is receiving disability benefits, it’s pretty shitty that some people are doing the “I can why can’t you?”
All autistic people are not the same has been said plenty of times, but at the same time my autism isn’t affecting me like yours does, so you must wrong or lazy

@catphone You can only try your best, and only you know your capabilities and limits.
I hope you find something that you’re able to do, but please don’t judge yourself or let others make you feel less either way.

What is the tutor helping you with op?

Have you ever had counselling and/or any treatment for your MH conditions?

Stop telling people your business for a start!

There are lots of people living the same way as you due to ND, lots of people that completely understand why and lots of people that will never be able to wrap their head around it. See this thread

People who drop out of life