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

Like you OP I struggle with noise, people, smells etc. but I go out and work and do what I need to do to get through life. I believe in most cases being at home just makes people more anxious/depressed. I think that if you're able it's better to be out there working and doing everything that goes with it - commuting/popping into the shops/chit chat (even though chit chat drains me and I can't be bothered with it). I truly believe that if someone is mentally and physically tired at the end of the day then they have no time or headspace to worry about being anxious.

Not intended to cause offence to anyone and I say this as someone who has suffered from anxiety and panic attacks.

Oh it's a shame about smells. Howabout fish or birds? I think being outdoors can help too. Do you like the countryside or wildlife? Maybe volunteering in that might help?

Dog groomer, kennel/cattery assistant, pet store retail work, animal photographer, zoo keeper, farmhand, caring for horses at stables or a city farm, commissioned art work of people pets.

It honestly does sound like you've been enabled to stop trying, to just give up and expect nothing of yourself. Where were your parents when you stopped going to school? What did the school do to support you to return?

I also don't really see from your responses any evidence that you've put many strategies in place to help yourself. From what you've said you take paracetamol for period pain, drink a yoghurt drink for IBS and have just started trying out some YouTube videos.

Have you had an in depth discussion with a medical practitioner about your periods and ways to improve them such as birth control, tests to check for fibroids, cysts, endometriosis, PCOS etc?

For your IBS, do you have known triggers in your diet and are you avoiding them?

For your autism, auditory processing disorder and misophonia, do you use things like ear defenders, loop noise reducers, meditation, counting rhythms, fidget toys, regular focused breaks to re-centre and ground yourself.....

I currently have severe agoraphobia, but I think it would be a dream to have a volunteer job or work in the countryside/with wildlife/animals in the future

Yes all of that.
the school kept holding meetings about the bullying I experienced and then doing nothing for years, I remember it. I felt suicidal at the time. I’ve been depressed on and off since childhood.
birth control like most medication makes me feel like rubbish. I’ll be trying anxiety medication soon though.
my IBS is triggered by stress and I do largely avoid foods that trigger it as well.
my mother was diagnosed with something I can’t remember what for her extreme period pains and she needs surgery so whatever I’ve got is probably genetic.
currently the GP felt around my stomach said she felt nothing and my period pain is caused by my IBS and nothing else is being explored. I need to essentially spend a week of the month in bed

Well that's great! That's something to work towards. Sometimes it's about taking baby steps.

Do you have a support worker at all? Or someone who could help you look for opportunities? Maybe there's an online course you could start with?

I'm also wondering if having someone visit with a therapy dog might help, could poss help you take small steps in going outside?

X post! Mine was to your last but one post!

Could you volunteer just to get yourself back out there and get some confidence? Maybe with an animal charity if that's your passion?

Do you have an oxfam shop near you? (Or other charity shop that has lots of branches so they have a good understanding of many peoples needs)

There are lots of things to be done. Like sticking price tags on things, steaming garments, putting books or clothes in the racks or shelves. At your own pace. Generally a day a week or a couple of half days a week. Might be worth a try to get you into a routine and get your confidence up.

Hi OP,

I also suffered from stomach issues when I was younger and in my case it was all psychological. I've got it under control now but if I ever do experience anxiety my tummy starts up again.
I obviously don't know your medical history or issues so I'm absolutely not saying this is the same for you.

If I can give you some advice. Get out of the house and walk. Even if it's just for 15 minutes do it.

I’m also an autistic adult who struggles to work. The longest I've been employed was 1 year and every job has resulted in severe burnout. So I do understand. I’m not able to work at the moment either due to autism and a health condition. But like other posters have said, volunteering might be a good way to figure out what type of jobs you may be able to manage. There are also other ways to find fulfilment of work really isn’t possible.

I built a career as a data scientist. My work requires focus so even from the beginning I had a private office. I have worked from home for over 15 years. This is very helpful for me because in addition to autism and the co-morbid anxiety, I have adult onset allergies that make leaving the house extremely difficult.

tech and academia are very welcoming to the absent minded professor variety of ASD. There are lots of us there.

The people who love you will understand, you don’t need the approval of random neighbours. Besides the voluntary work and maintaining well-being is a massive accomplishment

Although you have autism, it feels like you have labelled all people with autism under one umbrella. I know people who are neurodiverse that thrive at work and those that are neurodiverse that do not thrive. In the same way I know undiagnosed or neurotypical people who thrive and who are terrible.

Work = many factors. I agree with whoever advised you to volunteer. Start small so that you can figure out what kind of environment you like. I work with 2 people that have autism - they have learned their triggers etc (as many people do) and they are vocal about what they need - I am aware that this skill alone comes with time and highly depends on the work culture.

Could you find short courses or schemes that specifically help people that struggle to get into work for many reasons?

Also don’t worry about people’s comments. We are weirdly all made to want to work for some reason , but it’s not always feasible for many reasons. Find what you like - or maybe look into reducing anxiety etc.

The idea there is something shameful about being unemployed is one of the nastier elements of our society and it makes people who are already struggling with mental health issues feel even worse about themselves. Your worth is not tied to your employment status - ignore the narrow minded, ignorant judgments of others. Volunteering with animals sounds like a great idea.

Couldn't agree more. OP has hyper mobility ( very often this is actually EDS which causes very significant systemic problems for many; including awful gut problems.)

One Autistic person is one Autistic person so I think OP, the most important thing you can do in the first instance is be a bit kinder to yourself. No one can tell you what you're experiencing in yourself and what you should do based on that.

I'm such an honest person and I dislike lying. But when it comes to any judgemental neighbours, none of their business. Just lie if it makes you feel better. Say you're doing some part time admin working from home. Don't give them any more information than that. Just ask about them instead.

Loads of people will judge you if they know you're on benefits but that's what the public do. No one will know how your life truly is.

Start by keeping your personal information to yourself and don't over share your financial /work situation with neighbours or friends. No one's god damn business.

Good for you on volunteering.

Hi op, let me tell you a bit about me, i have quite severe fibromyalgia which causes me 24/7 pain, EDS, anxiety, OCD ( all diagnosed and medicated) high blood pressure and endometriosis and 2 years ago at the grand old age of 45 I was finally diagnosed with Autism and ADHD. I am basically falling apart but I have to be strong because both of my dc ( nearly 14 and home educated due to severe burnout ) and nearly 22 years old have autism too, they’re both high functioning but suffer greatly with their MH.

i loved school, was classic high achiever who achieved sod all basically due to undiagnosed issues: see above: and basically I’ve struggled in every single job I’ve had since i was 16 and still in 6th form.

For the last 10 years I’ve been unemployed, mainly to be there for the dc but also because my health has been declining. Last year was horrible for us and we had very little money and I vowed that i would look for a little job which would also help me with routine, give me some purpose other than cleaning and home schooling and guess what- I start next week doing a school escort Job for special needs
children. I had written myself off and I think everyone else had too, im like the black sheep of the family as I don’t work and tend to live in loungewear/pyjamas as i rarely leave the house.

I am so excited and a little bit proud of myself for doing it. Please don’t see this as anything less than an opportunity!! I don’t want to live on benefits forever and this is a small step towards a
better future. Please don’t write yourself off, you’re worth more.

Many autistic people do work though. I know several. I haven’t got an autism diagnosis but I have been told by professionals I display signs of possibly being on the spectrum, I have got diagnosed ADHD and a history of complex mental health issues including anxiety, depression, OCD and a diagnosis of BPD (but I don’t think I fit the profile any more). I also have mild to moderate chronic fatigue. I’ve ALWAYS worked - my life would be much, much worse if I didn’t. Obviously I don’t know you or the severity of your symptoms to judge but throughout my working life I’ve met many neurodiverse people. It does sound a bit like you’re making excuses not to work - have you ever had occupational therapy to help you find coping mechanisms for everyday situations and challenges?

I’m sure you’ve probably heard this before so apologies if so but many people, especially women, are misdiagnosed with BPD when in fact they’re autistic. I was one of them. I knew I didn’t fit the criteria and that it was the wrong diagnosis but who was I to question a highly trained MH professional? This was agreed many years later as being the incorrect diagnosis, just before I was diagnosed with Autism.

Many autistic adults don't/can't work, for whatever reason. You're very far from alone.

Many of the responses on your thread OP are from NT people. Everyone is different, autistic people are all different. No one else knows what it's like to be you.

Maybe you could find something- might be worth exploring, if you want to, maybe you can't.

I've had a few periods of unemployment, people are VERY judgemental about this. Ultimately it's none of their business.

Might be worth having some therapy around your feelings of shame which I'm guessing impact your self esteem.

Thanks, yes I have read about this. I think it’s a strong possibility.

If you can't work, then you can't work,
You get benefits to keep you alive and functioning, that's how our society works. It can't be a great life though, and that makes me sad for you as you sound down.

A wee fire in your belly is exciting! We all need something that gets the blood really pumping, for a lot of people work does that. Yep, it's work so can be a drag but there's nothing better, for me, than the satisfaction of coming home at the end of the working week, knackered but knowing that I did a good job.

If I couldn't work I'd need to get that satisfaction from elsewhere, have you thought about study at college in something that interests you? That can stoke that fire?

Exercise? Charity walks etc those type of events need loads of volunteer stewards etc or take part yourself.
Befrienders, especially for those elderly who really really benefit from people to visit and have a conversation with.

Basically have a bit of structure to your life.

I go all to pot when I don't have any in my life, for example I always since 16 yrs had a full time job, age 36 got pregnant and then went on maternity leave, thought I would love it - whole year off with baby. Hated it! Couldn't cope with the randomness of baby schedule and wondering how we would fill our day. Was much happier when I went back to work. Baby is now a teenager. For the last few years I've been part time at work, thought it would be great being part time. Turns out not, I've been struggling with what to do on my days off and feeling guilty for them not being fulfilling and I'm starting a new full time job next week, and I've fire in my belly again!

You need to find what works for you, and as I said earlier that doesn't necessarily mean paid work but a Purpose at lest. I hope you find it.

How many people posting are Autistic, I wonder? Because the fact is, over 2/3 of Autistic adults in the UK are unemployed. There is a reason for that, and it isn’t ’fear of work’.

ASD is a condition on a spectrum, as you know. Many, many people with ASD do work and sustain lengthy careers, with or without adaptation.
And others find they are unable to work.
The rise in diagnoses means more people are able to access the support they need to work effectively which is a good thing.
It has no bearing on your ability to work.
If you qualify for DLA and UC with no work requirements then that support is there to help you live a life possible for you.

Is the shame directed purely at what other people think? Because if you have enough support to be able to fund your lifestyle then honestly it doenst matter beyond that. You don't have to live in a way that others feel is justified, you really don't. It's also a matter of shifting goalposts because if you got, say, a 2hr a day simple job there would people who disapproved and said it was nothing. Whatever you do there will something you can feel shame about and something that others will turn their nose up at. You need to shift your perspective, not shift yourself to meet the perspective of others.

If you were the only person in the world would you still feel shame about this? If you personally would like to make a change then that's another matter, but it all sounds very much about feeling like you've failed compared to others when honestly who gives a monkeys?