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 don’t think the tribunal will think I’m fit for work. The tribunal is about disability payment. I know autism is a really common disability and I was worried that they might make it impossible to claim for in the future if most people are found to have it. But I’ve been assured by people on this thread that it won’t happen.

And you are entitled to judge who can and who can't because.....?

I’ve been having herbal tea, but it hasn’t made enough of an impact. I thought herbal medicine might be different. I might have a hormonal imbalance. My hair has gone curly by my ears and has gone wavy, it used to be straight and my mood fluctuates massively. I don’t know what the GP will recommend.

Just don't engage with people who do that. She'll likely be banned because following somebody over multiple threads with malicious intent is considered a serious violation, let alone advising others to do the same. Just let MNHR deal with it.

You're not being stalked, you're being held accountable. There's a difference.

@nonbinaryfinery, the op is not accountable to random posters on MN! That's a laughable idea.

This is a social media forum not a court!

Horminal imbalance is definitely possible. The hair changes could be a thyroid problem or an estrogen imbalance. Suggest the GP look into that.

Accusing people of stalking her when all they did was check her posting history is out of order.

It isn’t very Christian of you to cause me and other people a headache by stalking me, bullying me, and saying things that aren’t true.
You didn’t have to post. And you didn’t have to do what you did. And if you’re removed it will be because of that.

Hi Op,
I hope you have an advocate available if you have a tribunal.
Good Luck with that. It seems likely you will be successful.

Let's look to the positives...

You are highly articulate and enjoy writing.
You have previously sold your crafts.
You have access to a garden where you can rebuild some outdoor confidence and find some joy in planting/fresh air.
Something more could arise from any of these.

Maybe you could decide to spend an hour, say on crafts every day, or more or less depending on the energy available in that day. Work at your own pace and enjoy your creativity. Once you have created some stock you could look for gentle ways to sell it.

Please ignore the judgements of those who have not walked a minute in your shoes. If you can just accept your current limitations, feeling shame really doesn't help. For now, look for the small wins and don't compare yourself.

If you can't deal with people about you get a WFH job. I had flooding where blood flooded out of me whilst I had a super plus tampon and nighttime pad changed every 30 minutes once or twice a month every month for about a year before menopause but I still went to work teaching DC.

If it's going to tribunal, you would be best advised to take someone with you as has been suggested.

I would also suggest that you engage more fulsomely with your GP services as by limiting yourself to over the counter medicines won't enhance your claim - they will look to the drugs that you are on, the dose levels and how often you take them to assess your level of impairment (whether that be neurological, mental health or physical pain related).

I don't know when the tribunal is for but I did request for it to go to tribunal. My social worker said she would help me at the time. I know I've been very negative about my situation, it can be hard to see any positives a lot of the time. It's hard to accept that I'm disabled and I beat myself up about it a lot. I'm hoping that eventually my mental health will improve enough to start a business from home again, once I'm more stable. I do have a daily routine and goals to work towards which I set for this year. I will need rest after dealing with certain people on this thread, so I haven't had the energy for today. I'm just going to have a break and then come back to the thread to take notes. This has all been a lot for me.

Why do you keep referencing religion? This isn’t a religious forum as far as I know

No but I confused that poster and another poster together as I thought I'd seen them say they were a Christian but I was mistaken. Either way they shouldn't be following me around and harassing me

I was about to ask the same thing - I don't know how that's relevant anyway?

You do have some agency over your situation. Just leave the thread if it's causing you stress.

@catphone i haven’t read this full thread as I find is so upsetting that fellow autistic people can’t seem to recognise that autism doesn’t affect everyone in the same way.

This is ableism, pure and simple. It’s going on on another thread as well. Anyone with significant support needs gets told ‘I’m autistic, and I manage X, Y, Z, so if you can’t you’re clearly not trying hard enough / your parents enabled you.’

The problem you came with to this thread was shame, and I don’t see that nobody has helped you with that.

It seems to me that if you can come to terms with needing support, and not feeling that this is a reflection on your worth as a human being, this will free up some emotional space for you to explore what might be possible for you - in terms of pushing harder for medical care & mental health support and eventually participating more in life in a way that feels OK for you.

That would be "diagnosed autistic people". There are many, many particularly older people in the workplace who are undiagnosed (or in some cases going through the process of diagnosis) - I work in an area that tends to attract those with ASD (data analysis) and would strongly suspect a number of my colleagues would fit the criteria for ASD diagnosis (I have some experience in this area). They tend to manage work well as it is probably quite a good environment to support them (and are often hugely talented), but their personal lives and relationships are often difficult.
I'm not saying it is easy for every autistic person to thrive in the workplace (or indeed that access to suitable supportive employment for autistic people is not a problem) - just that the statistic you present may be misleading.

Yeah it’s really impacted me and I almost wish I hadn’t started the thread, but I’ll do a few things to calm down now and try to be more careful about what I post in the future.

OP is diagnosed, so she would fall into the 2/3rds. I can’t speak for non-diagnosed people as only trained professionals can accurately assess them. There are certainly autistic people who can work, roughly 1/3 of (diagnosed) autistic people do some form of work, which would translate to quite a few people who ‘know someone autistic who works’. That doesn’t discount that the majority don’t work.

People who try and stalk everyone’s threads are so creepy. I hear you op. I also think you’re getting a really rough time. It’s quite clear you haven’t been well and you just wanted a bit of sympathy

I would liken the criticism to if someone had told me I should have been looking for work and working in the middle of my cancer treatment. Because some people with cancer do work...

Not a comment on cancer just a reflection from my own experiences. Sometimes you just need to focus on getting well and functioning before you can really think about what happens when health issues have been overcome. At the very least the last thing you need is pressure and shaming for not being well enough to function as an employee.