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

I didn’t see anything wrong with your post @Jamjams
It seems some people are actually not that robust despite being happy to ‘say it as it is’

@MyNewLife2025 yes, I can see how that will happen. Honesty the benefits system assessment processes can be so hostile (in order to be viewed as rigorous) I don't know how anyone could think someone is not entitled to the financial and practical support from the welfare state they have managed to obtain going through that system.

@MyNewLife2025 thank you for your kind words, I probably shouldn't have posted really as I'm not well right now.

They all know ‘someone’ who claim benefit/PIP and isn’t actually disabled.

I’m sorry about your history (not going to repeated it so it doesn’t get deleted).
It sounds like you had and have a lot on your plate.

Take care of yourself. 🫂🫂

Abso-fucking-lutely. It seems that the #actuallyautistic social media crowd don't actually believe "if you've met one autistic person, you've met one autistic person".

I understand that some autistic people who work might be scared that someone (their boss?) will decide that they shouldn't be allowed a job any more, and so they want to emphasis that some autistic people can work and can excel in some jobs. The way to do that isn't to throw our fellow autistic people who have higher support needs under the bus by pretending that we can all work, but to emphasise that each of us is different.

Ah yes, because you can always see whether someone is disabled and disabled people always disclose their disabilities to everyone they meet.

There's a very high chance that the "not disabled" person on PIP has a hidden disability that they have opted not to disclose to the judgy fuckers because they don't fancy being judged.

There's a very high chance that the "not disabled" person on PIP has a hidden disability that they have opted not to disclose to the judgy fuckers because they don't fancy being judged.

@selffellatingouroborosofhate

Which is very sensible, at least in one way, since the stress the judgement causes can be so damaging to physical and mental health. But equally having less and less people to share experiences with means that we cannot take anything positive from each other either. Less opportunity for support and gaining understanding. So we get division and tribalism.

@DrRuthGalloway I was moved by your post. Had a little cry at the quote from Desiderata.

Well done to your ds, dniece and to OP. For trying so hard to navigate this world. Their condition makes them so much braver for just hanging in there.

With my dd, the limitations of her autism may seem subtle but they are profound in affecting her ability to form and maintain friendships and get and hold a job. She is at uni now doing a creative degree. She is the opposite of sharp-elbowed or able to hustle herself into a job in this competitive industry and fitting in.

I hope she can do it and at the same time, hope she is not crushed by the world or OP, like you, feel shame at not being to work. When she is struggling and masking and trying to get through the day, she does not need to feel judged or have her self-esteem trampled on or blame herself for being wired differently in an NT world. She only wants a little corner of the world for herself.

OP, much strength to you. I am sorry I have no answers, just to say I hear you

it’s interesting to me that @PierceMorgansChin who has a diagnosis of Autism and ADHD and who expressed her own opinion on this post (and who informed us that she has worked since 18 years old) is told by an Educational Psychologist “bully for you”. I would have thought in your professional
capacity you would have chosen far more supportive words to what is an amazing achievement.

It seems that invalidating the way my diagnoses effects me and now their job is one of your favourite things to do. So why don’t you go and work for the benefits agency or something? Oh wait.. you have no right

@Bachboo I think the assumption that 'I can do it, with ASD, why can't you?' does not take into account how differently autism manifests in different individuals. When coupled with mental health issues things can seem doubly difficult.

More supportive is 'I overcame this problem by.. [solution]. Might that help you?' but instead we get 'I suffer greatly but still do it'. Which can be tremendously off putting for someone who is finding just getting through the day difficult. They need to be positively encouraged to continue making positive steps to overcoming any issues.

So that's where frustration which can appear more hostile comes into discussion.

With all due respect my question wasn’t directed to you. You have your own diagnosis and your own life to contend with. It was directed at DrRuthGalloway who is free to answer it or not

I absolutely do appreciate that however would you have liked for an Educational Psychologist to have addressed this to your son when he achieved the fantastic goal of getting into university? Their role is ensure that children/ young people /adults who have special needs have their educational needs met and any successes they have should be celebrated and not met with a “bully for you” from a specialist in that field .

@Bachboo, I have no diagnosis, I am neurotypical, just for clarity. And I posted my comment by way of a possible explanation as to how the contention has occurred. We can learn from each other or not. Just throwing it out there.

I do appreciate your comment

Had the same thoughts about “bully for you”

I don’t think that and decent people wouldn’t pick at that comment either because at the end of the day they needed to be told that not everyone with the same disability can work because it effects everyone differently, and they have been coming onto the thread being ableist

I absolutely do appreciate that however would you have liked for an Educational Psychologist to have addressed this to your son when he achieved the fantastic goal of getting into university? Their role is ensure that children/ young people /adults who have special needs have their educational needs met and any successes they have should be celebrated and not met with a “bully for you” from a specialist in that field .

@Bachboo, my DS's individual funding was not being used primarily for him by the time I got his statement ceased.

I had to get his statement ceased to ensure his attainment was acknowledged. (It is fortunate as part of my degree I studies child development and linguistics including language acquisition and education so I understood what was going on). Unfortunately I strongly suspect the school was using his individual funding to support other children and not acknowledging his progression in order to protect this revenue stream. He used to be seated with other children all with conflicting and competing needs so that his individually funded one to one TA could work with all of them. Not only this often the work he was set was not adequately individually differentiated to his abilities so that the group work was possible. Once the statement was ceased his attainments were acknowledged and he was set more appropriate work.

So yes, I agree, it absolutely is vital to acknowledge and celebrate achievements.

However, I understood the way for me to tackle my son's situation was not to openly accuse the school. Instead I painstakingly logged evidence of every achievement of his I could and congratulated the school on their success at his progression. I also mentioned the strong possibility of having a Statement that attracted no funding (was in the news at the time) would be extremely burdensome for them as justification of funding was he had overcome the difficulties outlined in it and no longer needed the additional support (because he wasn't receiving it and was progressing well).

It is worth noting my DS although he was diagnosed with some additional education needs he was not diagnosed with autism. Nor does he wish to pursue a diagnosis. We were faced with 'inappropriate support' which was becoming detrimental to my DS.
This is very different to the op who is autistic and who relies on the support she gets.

And yes, 'bully for you' from an Ed psych would have annoyed me if they had said that in their professional capacity regarding my DS. But if I was expecting the op to suddenly upsticks and study a degree at university as my DC is doing then I think I might take it!

I don't think it's ableist to suggest that if this thread is causing you so much stress that you can't eat to then just put the phone down.

No but it’s ableist to tell me to work when I have repeatedly explained why I cant, and then attempt to shut down any supportive comments I get

Well I do.

I completely agree. I said the same thing. If the OP is really allegedly 'nearly collapsing' then put the phone down?

If that is genuinely happening, then the OP is choosing to return to this thread to make herself feeling that way, knowing she is at risk of collapsing.

I am not bringing anything up about the OP not working, before she has ago at me for that. I won't make another comment on that as there's more than enough comments on here causing enough upset. But it's fair to comment why the OP is choosing to stay on here and then say she's going to collapse due to the comments on here, but keeps returning. It's like she's looking blame someone or something of making her worse so then she cannot work. Nobody is here to blame. OP your situation must be dreadful for you, it sounds savage. But you do have autonomy. You can make choices like stepping away from the thread.

I repeat, none of what I've said is to do with you working or not working.

That should say 'justification of funding was moot as he had overcome the difficulties'

Indecently I discovered the massive postcode lottery regarding funding for additional needs at the time was misleading because our borough had decided to reduce the normal pupil unit funding (AWPU) because so many schools were applying for additional needs funding through Statements. So what was regarded as an additional need was less severe than a borough who funded schools through larger pupil unit funding and so authorised less funding through Statements.

So this further illustrates complexity and how difficult it is to compare 'like for like'.

So put the phone down!