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Use this forum to discuss neurodiverse parenting.

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How to deal with the shame of not working

647 replies

catphone · 03/01/2025 23:30

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

OP posts:
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9
JetskiSkyJumper · 04/01/2025 12:50

AlwaysGinPlease · 04/01/2025 10:02

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.

Being neurodivergent isn't the same as being ill though is it.

catphone · 04/01/2025 12:53

WhimsicalGubbins76 · 04/01/2025 09:05

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

I see what you’re saying but your whole post just came across as condescending. My doctor diagnosed me as being significantly mentally impaired because of my autism. Throughout my life I’ve never been able to leave the house alone and after spending a significant amount of time without someone to help me leave the house I developed agoraphobia.
I think this is one of the things where I can be functioning in this area sometimes but can regress in it and in other areas if stressed enough.
ive been hospitalised from meltdowns and the police called on me.
I now have help from social workers.
maybe anxiety can be worked through

OP posts:
pinkdelight · 04/01/2025 12:55

I think @Alucard55's post made a lot of sense, and then you said you now have agoraphobia, which would fit with their concern about the approach making a person more cut off from the world. Regardless of the shame issue and income, I hope you find ways to reverse that direction and open up your world more as being so closed off doesn't seem to be helpful to your MH either.

pinkdelight · 04/01/2025 12:56

(I also don't think this thread is akin to a 'pack of hyenas' nor that most posters have no experience of ND. Quite the opposite, and several people have been insightful posting from personal experience.)

catphone · 04/01/2025 13:03

I do want to improve my situation so the suggestion to start the business from home is an option for me. But I was worried because there’s so much competition, there wasn’t really when I was selling from my house where I used to live. I do have a routine at home it’s just not a work routine

OP posts:
Neveragain8102 · 04/01/2025 13:03

Hi OP - the gynaecological diagnosis your mum had - was it endometriosis? Or adenomyosis? Both have a genetic component, not can take years to diagnose, and both are frequently brushed off as 'IBS'

Baileysatchristmas · 04/01/2025 13:04

If you weren't able to cope with school and have a tutor now, are you going to be able to keep books etc on your own or will you need someone to assist with that? Just thinking about self employment and how you'd need to do all your profit and loss etc .

pinkdelight · 04/01/2025 13:08

Baileysatchristmas · 04/01/2025 13:04

If you weren't able to cope with school and have a tutor now, are you going to be able to keep books etc on your own or will you need someone to assist with that? Just thinking about self employment and how you'd need to do all your profit and loss etc .

i think it's worth her just taking first steps for now and getting engaged in exploring possibilities. It's too easy to think of reasons she won't be able to do things, whereas if she makes a start then the feeling of having accomplished something will make the less step next scary. But thinking about managing the books right now - or indeed about competition issues in the local area - are just going to kill off the impetus. If she's at the level of not doing crafts because some days her fingers feel too sensitive then simply doing some crafts would be a big step forward. Profit and loss management would be a nice issue to grapple with further down the line.

stargirl1701 · 04/01/2025 13:23

I think you are trying to change way too much, OP.

Focus on one thing each season. 4 this year in total. It's Winter now so I would try to get a GP appt (ask the receptionist which GP specialises in Gynae) and book a double appt. Write down everything about your periods and give to the GP. Take advocate with you, if you can. Try whatever the GP advises. Go back in 6 weeks if that didn't work and try something else.

Spring. Try aiming to sit your garden for 1 minute and then build that up. Take something 'to do' with you when you go outside. Knitting, sewing, even a fidget.

Start small. You are more likely to succeed.

BigMingeEnergy · 04/01/2025 13:34

TheWayTheLightFalls · 04/01/2025 07:23

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.

I agree with this.

I could come back with various medical ailments that would stop me from working, but I chose not to. One, because I want a better life, and two, I don't want to be isolated.

I'm autistic and have ADHD. I've also battled cancer since 2017. No it's not a race to the bottom, but I choose not to let those medical conditions rule my life. Every suggestion someone has mentioned, you come back with a condition that stops you from doing it. You are your own happiness OP and you can push past some of these do so something you like. I think your anxiety is fuelling this making you think you CANT do these things.
I get anxious sometimes as everyone does, but I don't have this huge amount of anxiety you say all autistic people have.

You choose your own path in life. Of course you don't choose your medical conditions, but you can choose to work around those, if you want.

There's no shame on being on benefits, but just say you choose not to work and own it, rather than hiding behind so many medical conditions.

Good luck and I hope you find something that works for you!

BigMingeEnergy · 04/01/2025 13:36

WhimsicalGubbins76 · 04/01/2025 09:05

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

This is what I was trying to say but this poster put it better than me.

In short, you're choosing not to work. That's your choice, but don't hide behind all these medical conditions. Many people work with extensive medical problems. Just own your choice that you want to stay on benefits!

ForAzureSeal · 04/01/2025 13:44

@catphone I think the concept of "work" and being a "productive" member of society is vastly overrated. You are inherently worthy of love and care. It sounds like you have significant issues to manage daily. Can you see this as your "work"? Please try to ignore the voices here and in your head, and community telling you you need to "do something" externally noticeable. You don't. Sending love.

BlossomToLeaves · 04/01/2025 14:12

You might be looking at it with too much of an "all or nothing" attitude. You don't have to get a permanent full time job that would be overwhelming and lead to a breakdown. Maybe you could work for a little while when you were going through a good period. Maybe you could do a few hours, or volunteering, and see how it goes. It doesn't have to be forever. I have found that sometimes it is easier to cope with sensory things or anxiety or whatever when other aspects of life are more sorted. So if something like smells is putting you off working with animals, maybe you would find that if you were volunteering for only a few hours a week, without the stress of being relied on/having to be there, having pressure to perform, having the stres of full time work, etc, then you might be able to develop the strategies you need to cope with the smells when it's one of only a few sources of stress - rather than thinking you need to take a stressful full time job with social stresses and performance pressures and organisation problems etc and then cope with smells on top of that, which might be impossible.

Or for example, I can cope with certain aspects of work anxiety better when I have reduced social commitments, or have more work at home; having more financial stability means less anxiety about things going wrong in the areas that are difficult, because my life doesn't depend quite as heavily on having to do well in those areas. So things that seem impossible in some situations might not always be like that in others. And some of it is incredibly hard to do and very uncomfortable/painful - but with strategies, some of it can be managed, as long as other things are in place. I think many people do have to endure some things that are very uncomfortable as part of their jobs, but they are able to do it because they don't have so many other challenges in all the other areas of their life - you have loads of difficult things to manage at the same time, which makes all of them feel impossible. But if you could reduce some of the stress in other areas, then you might find that you are more able to deal with one challenge at a time. Not that it will be easy or that you'll find it comfortable or painless or anything, I think that's unrealistic for anyone, but maybe you can get to the point where you can tolerate that smaller amount of anxiety.

You could possibly find that even just small bits of work or volunteering, with no pressure to make them 'successful', might give you motivation, structure etc in a way that a full time job wouldn't. So even selling your crafts online - if there is competition and you don't do as well as you wanted, it doesn't mean you won't get something out of doing it. Or if you tried it and had to give up, that's OK too; you don't have to get to the point where it's a breakdown and affecting your health - you could see how it goes, see what strategies might make you more able to cope with the difficult bits, see if you can ease into things enough to cope with the health side of it, and keep things on the right side of manageable.

Spanielsaremad · 04/01/2025 14:21

catphone · 03/01/2025 23:50

I’ve never heard of someone with autism not suffering with severe anxiety/some kind of co-morbid condition, usually multiple. I forgot to mention that I also have misophonia. The symptoms I experience are really common, I don’t know how others with autism manage to work since stress makes symptoms more pronounced.
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.
If I had a job I would want it to be in nature or with animals. But at the same time I’m extremely sensitive to smells. I thought I might start a craft hobby and sell things, but there are days my fingers feel too sensitive to touch anything.
It is one of my long term goals but right now I need to focus on my wellbeing. At the same time I don’t know how I could work ever.
life stresses me out so much I’m not sure if I can cope with it and working. How do you do it?

Edited

I'm autistic and hypermobile. I've never suffered with anxiety or anything like that. I've always worked since the day I turned 13. I currently work in a high powered professional career.
I find the structure and routine very helpful for me.
If I were to sit around in the house all day every day with no purpose it would make me very ill.

Octember · 04/01/2025 14:21

Don't forget @catphone too, you are probably entitled to keep an amount of therapeutic earnings in the short-term, so in ways that should take some pressure off and give you some space to try different things and come up with something that works for you.

HermioneWeasley · 04/01/2025 15:52

ForAzureSeal · 04/01/2025 13:44

@catphone I think the concept of "work" and being a "productive" member of society is vastly overrated. You are inherently worthy of love and care. It sounds like you have significant issues to manage daily. Can you see this as your "work"? Please try to ignore the voices here and in your head, and community telling you you need to "do something" externally noticeable. You don't. Sending love.

It’s a good thing everyone doesn’t think like this or society would fall apart.

Jifmicroliquid · 04/01/2025 16:43

HermioneWeasley · 04/01/2025 15:52

It’s a good thing everyone doesn’t think like this or society would fall apart.

Isn’t it just!
Some people on this forum just don’t seem to live in the real world.

catphone · 04/01/2025 17:01

If you can manage with all these disabilities/conditions without shutting down and losing your ability to function I’d love to know how it’s done. That’s partly what this thread was about. If I push through then I can’t function at all the next day.

OP posts:
HoundsOfHelfire · 04/01/2025 17:31

LittleHangleton · 04/01/2025 00:03

I did wonder. Its difficult when you don't learn the value and importance of just showing up at school. It's not just about learning. It means you aren't used to the basic expectation of getting up and being relied upon to turn up on time.

Start setting some routine in the mornings that you get up at the same time, early, every day and leave the house bo matter the weather or hoe you feel.

One one doesn’t understand about teens in autistic burnout

ThisKeenCoralPoster · 04/01/2025 17:33

You sound like you definitely have low self esteem OP, which is so common is HF autistic adults. If you find the social demands of work challenging, I’m not sure if you can explore remote working, or finding a niche? There’s no easy answer.

SanctionedBreak · 04/01/2025 18:00

catphone · 04/01/2025 17:01

If you can manage with all these disabilities/conditions without shutting down and losing your ability to function I’d love to know how it’s done. That’s partly what this thread was about. If I push through then I can’t function at all the next day.

Well to sum up PPs here, simply try harder. You’re not trying hard enough, so try more. Have you tried harder yet? Well keep trying.

HoundsOfHelfire · 04/01/2025 18:13

There’s some bloody awful posts on this thread. As the parent of a child who suffered autistic burnout in school, this thread highlights a real lack of understanding and compassion for people who are particularly vulnerable. Lots of people with autism can work, lots of people with autism can’t work despite their best efforts.

OP can you request a medication review for your anxiety?

Also would you be able to make your craft pieces but give them to an animal charity shop to sell? Having a purpose, whether paid or not might help with self esteem. You really have nothing to be ashamed of, please do not measure your value by paid work.

Jifmicroliquid · 04/01/2025 18:14

catphone · 04/01/2025 17:01

If you can manage with all these disabilities/conditions without shutting down and losing your ability to function I’d love to know how it’s done. That’s partly what this thread was about. If I push through then I can’t function at all the next day.

The problem is, you are coming at it from someone who has not worked or participated in life for a long time, so I don’t doubt that for you right now, it’s going to feel like hell on earth when you try.
I wasn’t given a choice to not go to school or not work. My parents made it very clear that school was essential, as was a full time job. There was no get out of jail card for me so I just had to force myself to get on with it. If I’d have said I wasn’t going back to school I’d have been dragged into the car and deposited there. It sounds awful but it was the best thing that could have happened to me.

But my experience is not going to help you, because I didn’t come at it from having been essentially a recluse for so long. All I can advise is that you start small- find a morning or two mornings/afternoons a week volunteer position. You then have the rest of the week to reset afterwards. Yes things are going to feel uncomfortable, but the more you put yourself in these positions and manage it, the more your confidence will grow. It doesn’t happen overnight, but you’ll start realising that you can function the next day, and the next.

catphone · 04/01/2025 18:22

I think I should start making crafty stuff again cos it’s all I could manage with the agoraphobia then eventually I want to do something with animals.
Right now just getting the basic tasks done everyday is enough I don’t know how others do it if I push myself too much I can’t think anymore I get burned out really easily I don’t know what the answer is it’s easy to tell me that I’m not trying hard enough but if you don’t tell me what exactly I could do then I don’t know.

OP posts:
Baileysatchristmas · 04/01/2025 18:26

Doing something with animals is unrealistic unless you're prepared to deal with smells and poo though. And you need to be able to get out of the house.

What support can you access to work towards that?

I'm not being unsympathetic, just realistic. I do hope you can find something soon that enables you to feel more fulfilled