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

But you need to try them yourself and assess, with your GP, if they work for YOU and not be hamstrung by what happened to other family members.

Op I've no doubts about your disabilities and how difficult they are to manage.

If you feel like you might need to work, however, I would research careers you can do flexibly from home. I mentioned writing upthread. Other things people do are things like editing and filling in surveys, arts and crafts /selling on Etsy. Maybe have a plan to properly research these things now and see if any of it seems possible for you.

Also see what you can do to improve health. I think the Yoga is good but if you can manage to tackle your agoraphobia then walking and slow running might have massive benefits. These type of exercises protect against metabolic and circulatory diseases and reduce inflammation and improve mental health. It doesn't matter how small you start - it all can make a difference!

it is relevant what happened to relatives because I am genetically related to them. The GP themselves said it was important information to have

The GP isn’t going to prescribe something that they think is going to be problematic, so that’s one thing not to worry about.

I have similar issues in my family history and my GP has always taken that into account when prescribing, sometimes not prescribing something consultants suggested and sometimes starting off on a really low dose.

It really would be worth you at least trying what is suggested. Not from a work perspective, but from a making you feel better perspective.

How are you trying to help?

Yes because of the health conditions that run in the family. My own mother had to stop taking medication due to the side effects. She warned me I would probably get severe side effects too. And then what's the point, swapping one condition for another, if that makes sense. Schizophrenia and seizures also run in the family. I've been wary about medication but I let the GP know that so they can potentially find something that might work.
I'm sorry but the more I read it seem that you've decided you have all these issues with no diagnosis and no attempt to remedy with proper medications, I'm also very surprised you've managed to claim benefits and have no attempt at work when people with very serious diagnosed conditions are deemed fit to work.
You're refusing meds due to your mum saying? what age are you? use your critical thinking here and help yourself.
There's all sorts run in my family but I'm not sitting scared and refusing to have a life because of it, life is passing you by.

And the walking / running needn't be particularly physically challenging to get benefits from them.

I started running after recovering from cancer treatment. I was not in great shape, at all, overweight with sciatica but I found I could do it. When I learnt to run I thought I couldn't run at all after cross country at school left me wheezing. But I saw this clip and realised it was my technique at fault.

So my point is sometimes things seem more challenging than they actually are. And of course people big up the challenges to validate their efforts.

I would suggest starting with something you think you can do and build up a habit.

Let me get this clear because you don't seem to understand
At first I avoided asking for medication. I wanted to try natural methods to reduce my stress and pain. After hearing what happened to my mother when she took medication, and knowing about all the really serious medical conditions that run in my family, I didn't want to risk it.
Natural methods haven't worked enough. So then I asked the GP. That decision took a long time to make, the GP understands why I didn't ask. And after learning about the conditions that run in the family, he can be more careful about what medication he recommends.

Try signing up for Prolific. It’s not huge money by any means but it’s legitimate and may give you a sense of doing something ‘of worth’ in that you are contributing to genuine research studies. It’s popular so there’s a waiting list to be invited but I would suggest it. It’s not overwhelming in the slightest, you can take it at your own pace, and if anyone asks what you do you could say ‘independent research assistant’ or self-employed and if they press, you provide feedback for research studies.

He hasnt prescribed anxiety medication yet. I bought some natural gummies from boots myself. Im waiting for a appointment which is soon to talk about any medications that might be suitable.

Autism is such a spectrum as you know. My husband is autistic and incredibly successful as his work is a fixation and he has sorts of adaptions. But that’s him. He absolutely does have anxiety and sensory issues but that’s more around social and family life. Everyone is different and you may be unlucky in how it affects you .I think you need to take time to focus on your health and yourself. That comes first. And everyone is different. Maybe some good therapy to help find out what work for you.

And fuck other people and their stupid opinions. If you can’t work right now, you can’t work. They’re idiots.

Personally I think you need a proper medication review. St John’s wart or similar isn’t enough to deal with the agoraphobia

Yes, my entire life, but what's your point? I only recently asked them about going on medication.
I don't know if it was you, but the comment about me not being diagnosed isn't true. I don't have to work due to my autism and the way that it effects me. I was diagnosed with that as a child. Everything else is on top of that.

Do you do strengthening exercises to help your hypo mobility, op? Maybe explore what you can do there if you haven't already.

I find rubbing in castor oil everyday helps my joints. Apparently there are studies that say it can be as effective or more as NSAIDs. So you could explore that if you haven't already.

Ignore if you have tried these things. I'm just throwing it out there in case you haven't.

And I agree some medication review and extra support but not because I’m shaming you, but because I think you deserve better.

@sparkorstill sorry missed that.

I aim to do 10k steps a day. I aim to do 25-30minute pilates or cardio a day. I can't always.
I was advised to try and walk and exercise by a physiotherapist to prevent my hypermobility/joint pain from getting worse.
I still experience a lot of joint pain and inflammation.
I don't appreciate you coming on here to interrogate me and try to undermine me. It's clear you're not trying to help, and the person you responded to has been really positive and helpful