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 hear you OP. I've had similar through different illnesses in the past. I used to be a push-on-through-er, working all hours and juggling huge amounts. Thrived on it for a while. Then I crashed and burned due to one traumatic stressor too many, over a short space of time. I've also had energy sapping physical issues requiring surgery and bereavement related ptsd, which left me with overwhelm and fatigue.

I've learnt to live with my conditions and my life goals over the last 20 years have been about learning where my limits are and adjusting my life accordingly to live within them. Everyone has their limits, but are not always aware of them until they've pushed past! Some people's limits are very high and some are very low. Some people naturally have more energy than others. I'm very jealous of people who can fit so much into their lives and also give to others. And of those whose lives have never been disdadvantaged due to their health. I am back to full-time work but don't have half the energy I used to, or able to sustain high output energy for as long - it's really bloody depressing, but I am much better than I was and I'm very grateful for that.

I have every empathy for those who are mid-journey. I get ever so anxious when I know I need to rest to prevent an episode of fatigue and am around unsupportive people, or strangers, lest they judge. As I know the consequences lead me to make mistakes, get decision fatigue and lowers my output. Luckily I'm in a fabulously supportive team.

There's hope for you OP, because you have interests and want to work, but you really have to learn how to manage the guilt or shame and build up some self esteem, because you don't deserve to feel either of those things. The people that judge do!

I am entirely of the belief that if you spend enough time mulling over the many issues that you have you will always find a reason not to work. There are many, many jobs out there and voluntary roles that could suit you.

Your neighbour being unwell and returning to work a few days after is what people normally have to do to get by. Not going to school and not getting a job were not options given to most people, that's why most people have to work and have discipline in their lives. I work with many ND adults who I have no doubt have endured their struggles but they have not allowed themselves to isolate even further from society.

I almost wish I hadn’t started this thread cos no one’s actually telling me how they manage to do it all without burning out. I’m telling you I can’t think anymore or function and my autism and processing disorder gets more pronounced

I haven't had a diagnoses yet - started looking into it when my child was diagnosed and I said I didn't understand what about this assessment told them that they were autistic and they said I probably am too if I see all the reasons for diagnoses as "normal" behaviours.

I feel like 5 years ago I was very similar to yourself. Actually finding out there could be autism in me has greatly improved my quality of life which is why I haven't pushed for a diagnoses as if they said I don't have it then I worry it would undo all the good work I have done.

I think someone was right when they said about the routine of just showing up. I'm now higher management in my job. And literally we make accommodations for everyone.

Literally, even when I'm in agony (I have severe endo) I just turn up and let everyone know I'm having a pain day and so I help out where I can or do paperwork. Or find mindless cleaning tasks in which I can sit down. And worst case? I go home. The key is just to go regardless and you'll find the more you immerse yourself the more you will get used to the routine.

The same when I have days in which I can't bare people I put myself somewhere isolating. Usually there's no problem with that because most people want to be around people.

But literally just getting up and going is key. I've had to take 6 weeks off just now because of a personal issue and that's messed me up as I can't take longer that 10 days off work at a time without it making me fall back into the mindset you are in but I had a chat with a coworker and it's pepped me up a bit for going back.

Agoraphobia is very much in the mind. And it's so easy to sit here and tell you that but it's also that easy to push yourself out of it if you push yourself into mind over matter. I find actually gaslighting yourself, actively combating the bad thoughts. I do it rationally, like if I can't go out because x,y or z happens then I figure out the probability of that actually happening. Equally getting back into the world is hard because it's a huge change and to most people it doesn't sound like it but it is. I got a dog to help because I couldn't not take the dog out. I also love and wanted a dog. This has now backfired because I now work full time and am out the extra expense of having things in place for her 😂 I truly thought I wouldn't ever be able to work more than part time.

But truly 5 years ago, I was just like how you've described and I done a lot of mental work. I would say go with what feels right. No one therapy will work so take what works and forget the rest. I do a mixture of so many things!

I was on UC and PIP for a physical health issue and last year when my review came up I couldn't even reapply because truly I don't need it although the condition is still there.

I thought I'd never own my own home or have a career and I would just be as I was forever. But literally in 5 years my whole life has changed! I just need to learn how to drive and I think I will be winning at life.

It's almost like a game, especially for work. You find out the rules and go for it.

Good luck, you can change your life if you chose to! Mind over matter is the key!

You must all be so privileged and have had all the support that you needed

No-body can tell you that. You need to take responsibility for yourself OP, you’re an adult.
I hate to say it but it’s not a paint-by-numbers situation.

People have offered good advice as to how you could start to get out the house for a morning or two, but you clearly don’t want to know.

No-one has the magic answer that you seek. You are coming across as someone who doesn’t want to actually help themself.

Not at all. Just very tough love by realistic parents.

I think you’re just very rude and bad mannered

Think what you like. If you read my posts, I have actually tried to offer advice. And I’m someone who is working full time with autism and a life limiting chronic condition that nearly killed me. But whatever.
I feel very sorry for you OP.

I’m gonna have a break from this thread.

I used to know a Pensions Admin manager who clearly had some form of autism OP. He did very well in his career. He wasn’t overly outgoing but that didn’t hold him back.

I had no support and was a single parent. I just slowly and gradually changed my mindset, if you ask specific questions I can give specific answers to how I got where I am. Asking about it shows that you want to change and I found when I first started reaching out I found a lot of advice the same way you are which was unattainable for me and my specifics. And it's not the answer you want and you might not be 'there' yet but it's literally a case of you have to just do it. I promise you, you will mentally start to change. I don't do walks for the sake of it or getting up and getting dressed for the sake of it. I'm still quite a goblin on the day to day and so still have work to do but something I did do is I started walking to the local shop for little things. This saved me money on deliveries and also got me out.

I think that’s sensible.
Take care OP. My contributions to this thread really have been to try and help, even though you can’t see it.

Not at all.

OP, my dd has ASD, hypermobility and a few other conditions, she’s currently at uni but when not doing uni work she struggles to do much else, she’s currently on antidepressants and I’m worried what she will be capable of doing work wise when she finishes uni. Like you it takes up a lot of her energy just to function and she’s often in pain or in burn out. She does volunteer working with animals which she loves and would love to work in a zoo or pet shop but it would likely be part time.

If you like crafting you could hire a shelf/area in a shop of you have anywhere like this near by? We have a few shops like this where crafters rent out a shelf to sell their items from. It won’t make you huge money but it would give you a sense of achieving something whilst making some extra money?

If you don't know what you can do, how is anybody else supposed to know? I fail to understand why you feel shame, when what you have described in your post, you struggle daily. Just live your life, as best as you can, for you.

did you miss the part where I explained I have a processing disorder? This is too much for me to process and acknowledge right now.
I just don’t feel like things have been explained to me in a way I can understand or maybe I’m just not in the right state of mind to absorb it.
I think I’ll eventually work from home selling crafts but I can’t do that until I sort out my mental health first. I do have a routine but it’s so easy for me to fall out of it and get dysregulated and burn out.
It might have come across to you that I wasn’t listening to what you had to say but I’ve read every comment on this thread and I still need time to absorb it. Just because I don’t understand everything or haven’t acknowledged everything or think that not everything works for me, doesn’t mean I think you weren’t trying to help.

Because others seem to have the same problems as me but somehow manage and I just don’t now how because for me it doesn’t take much at all to burn out and it’s a struggle to even get the basic tasks done.

If I get enough energy to do crafts again that would be a good idea. I’m gonna be starting gardening this year to hopefully get me out in the sunlight more.
It’s not that I can’t leave my house at all but I can’t go into shops or on public transport or anything like that I avoid places where there’s anyone there if that makes sense

Now that I think about it I might get a cleaner or someone to help me around the house and then that might free some of my energy for other things

Because others seem to have the same problems as me but somehow manage and I just don’t now how because for me it doesn’t take much at all to burn out and it’s a struggle to even get the basic tasks done.

Because they are not you OP. They do not live in your body, and should not be compared.

I was diagnosed with autism & adhd a year ago. For the 10 years prior I ran my own business, before that worked part time around my children, before children worked full time. I am now utterly burnt out & can only manage pretty basic tasks, & am not working. I have found a niche interest which I am working towards a qualification in, & then will hopefully be self employed, on a flexible, part time basis, as this is all I can manage.

OP only you know yourself & the limits of your disability. I am sorry there has been so much ableism on this thread; it's disheartening especially coming from other autistic women. However, we are all different & with a spectrum condition there is going to be a huge variety in the amount we can each cope with.

I would suggest that a good starting point would be to work on your self esteem, whether you end up in paid employment or not. Please be kind to yourself & trust that your worth is so much more than employment. When you hopefully feel a bit brighter you could look at a day a week voluntary work maybe? May help to give you some structure & purpose. I wish you all the best.

That's an awesome idea OP. And you're completely right, rl support is essential and services are very much lacking. Make the most of the days when you have energy and forgive yourself on the days you don't. To hell with what anyone else thinks your outcomes should be, only you can really be the judge of that. Best of luck.

I would say 1. some of them need to be managed better and you need to believe that's possible before you will do something about it 2. some of them will improve with work, especially mental health and 3. some of them are not going to change but are compatible with some types of work.

No, the reality is that over 2/3 of Autistic people in the UK are unemployed.

You need to qualify this - "over two thirds of those diagnosed with Autism in the UK are unemployed".

There are lots of older people in the UK who have never been diagnosed, and never will be. Lots of them work. I may be one of them! Certainly a couple of good friends are (and have sons who have been diagnosed and who now do not work in their early 20s). We have had to make strategies for ourselves because back in the day, we were just a bit 'odd', or 'nervous' or 'highly strung'. Despite lots of us having very fine brains, we had to keep our lives small so as not to trigger breakdowns. Often this knowledge came as a result of the first breakdown. But you are armed better - you know you are autistic and can strategise from the outset!

Good luck OP, keep it small, one step at a time.