I don't want a job or jobseeker
I've been trying to force myself to want a job, but I just don't want one. Jobseeker is basically a job, so I don't want that either. Its just not worth going through all that that for such a tiny amount of money. Its not even worth it.
I know money is important, but honestly being homeless, broke, starving, destitute, sick, dead etc as a consequence isn't scary enough. There's things that will happen to me that are 100x scarier then that. Like climate change.
I genuinely from the bottom of my heart dont see a point in working for money. It just doesn't make any logical sense. Money isn't even rewarding, it just means you get to live a bit longer. To work longer. Why would I just waste my time pretending like I will live until retirement age? That's just not realistic.
I just want to spend time with my family and walk in the park while I can, before bad things happen. I don't want to waste any moment because this time of my life will probably be the happiest.
I have severe ADHD and I can tell that if I went the jobseeker route that I would get so many demerits and stress and appointments for years... its just not worth it. I don't want a job, its not even important.
I know people do things even though they don't like it. But I struggle to do things that I like too. I struggle a lot to do very basic activities of daily living. Absolute necessities. I think to do something and my body doesn't respond. It doesn't matter what it is or how severe it is. I had an allergic reaction to food earlier today and my airway was closing up fast. I should have been rushing to the doctor, but my body just wanted to sit, I struggled to care about it even though it was getting harder to breathe. It all happened passively.
I'm fine now, but yeah idk that experince just left thoughts in my head. I don't understand how people just do things whenever they want to. I literally have never been able to do what I want or what I need. I can move but I'm not doing what I want/need. Its like being paralysed in a moving body. You could say typing here is 'moving' but if I could choose I would not post this info here as its too personal. Also, I want and need to be doing other more important things.. But its not like I have much control over what my body chooses to do, so.
Anyway if you have thoughts, please share. I'm just lost here. Things don't really feel real and I've been acting super out of character (like really mean) recently. Don't really understand why I'm like this.
Another update, 3 months later.
PDA is a type of autism where your body automatically goes into fight, flight or freeze when it perceives demands. This is because demands are incorrectly perceived as threats by the brain. This happens for all demands, even ordinary daily things like participating in a hobby I enjoy, self-care or a friend saying "let's hang out on Monday".
99% of the time I'm in freeze response due to PDA triggering all the time, but contrary to my previous-held belief, the freeze response =/= dissociation. When you are dissociated, you can still move your body around. Not moving isn't part of dissociation in and of itself.
When the body goes into freeze response for a long period of time, the word for it is tonic immobility. It occurs in humans who are subject to intense trauma, who couldn't escape with fight or flight. It seems like even though I am not going through intense trauma, my body incorrectly perceives so much threat that it causes this response. A more accurate term used to describe this is the flop response- it's where fight or flight to considered to be made up of 5 F's = fight, flight, freeze, fawn and flop. Freeze response describes tense and rigid immobility, which is not what I experience. During flop response, the body goes limp, which is more accurate for me. It's like the body is playing dead. Dissociation is also common, which is where I believe my initial misunderstanding stemmed from.
Both 'tonic immobility' and 'flop response' are descriptors, but are not the official medical term for this condition. The word for not being able to move for weeks or months is catatonia. It can co-occur with multiple different mental disorders. There is autistic catatonia as well, which I've found is most similar to my situation.
Considering this, I am in the process of waiting for appointments, but it's around Christmas now, so I'm going to have to wait quite a while.
In the meantime, I think I understand myself more now. Even something like the disability pension absolutely sends panic through me. You still need to complete obligations and requirements to have it, which I can't complete when I'm in a catatonic state, since I can't move. Also, those obligations being demands would trigger my fight or flight response, triggering the flop response- which is catatonia.
I believe the current system for receiving centrelink benefits significantly worsens my symptoms. I can't work and I can't receive benefits without going catatonic.
Hey Spl spl,
Thanks for such an informed post - you really have a handle on your condition which can at least take some pressure off your anxiety when confronted by demands of daily life. I'm thinking a printout/flyer of your condition could help new people you meet to find understanding and awareness - just as you have done for me!
Regarding Centrelink, it sounds like a vicious cycle where the requirements trigger the cause. I have heard that you can request an advocate to act on your behalf so you might find some assistance there.
Google Disability Advocacy as a starting point. Alternatively, a friend or relative might lend you a hand?
Well done, Spl spl, you are quite industrious and have eminently demonstrated your case! Do keep us posted.
Hi transcribe, thanks so much for your reply. The way you worded things is a cool and positive way of looking at the situation, which I really appreciate.
Things have actually been pretty good, I managed to get an autism diagnosis. PDA is more well known than autistic catatonia. The person who assessed me said they didn't know about it, and I don't blame them. Sometimes I go back and forth a tiny bit on what's going on, but everything matches so I'm sticking with it.
Recently I have been trying to enrich my life more. I realised I was just focusing on figuring out what was wrong this whole time, which made me feel very hopeless.
I have been lucky enough to have some time away from school for a bit. So I've been able to start some hobbies and grow my confidence... it's really weird because it feels like this should have been happening when I was a teen, not an adult. But better late than never.
I dont know if anyone reading this will relate but just in case, so far the things that help me are:
- Adhd medication (low dose)- clears brain fog & lowers stress so it's easier to handle demands
- Sleep- I still haven't figured out how to go to sleep on time but good sleep helps everything the most.
- Excercise- nothing crazy, just enough to get the 'boost' from it. For catatonia that boost helps to keep up momentum and keep moving. Excercise works almost as well as the medication does.
- Making a homemade standing desk- this is odd but yeah basically standing up & walking around instead of sitting in one position helps stop catatonia from kicking in.
- Wim Hoff method- not for everyone but surprisingly effective. From what I understand, the 'shock' of cold water is the same 'shock' as the fight or flight response in the body. If you practice calming down from that initial shock while in cold water, stress also becomes easier to handle. The breathing excercise helps with sleep too.
- Not having demands- I'm on a break from school and it's absolutely crazy going 6 months without a big catatonic episode. Like there have been little ones but nothing lasting months. My relationships have been less disrupted and I've actually been able to feel calm which is amazing its the best feeling ever 10/10
- Not feeling guilty if catatonia does happen. Multiple times I've wanted to go somewhere but I got stuck and couldn't leave. It sucks but life happens, instead of being ruminative it's better to forgive & forget.
- Communicating PDA/catatonia to others helped a ton. Seriously.
Hello Spl spl,
I found your thread tonight, & although I need to be getting some sleep myself, (I have not established any approximate sleep routine, except most is during the night, & one or two - or three, catnaps. & I've got a flue.... but nevertheless, I have read through all of this your thread, & I am impressed how you have managed to research & figure out why you have the symptoms you describe. Now, that 'what is this?' is no longer a sticking point, you can begin to use strategies you've discovered, & maybe come up with strategies of your own?
I know nothing about Pathological Demand Avoidance, except for what you have said here. Thank you.
Goodnight, for now, 🙀
Thanks for giving this a read and for your reply. Hope you get some rest.
Pretty much what you said is what I hope to do. That whole "what is this?" mind trip did go on for a few years so it's strange (in a good way) that's not in the back of my head anymore.
I just realised this but it's been 1 year since I first posted here... Tranzcrybe, I don't know if you are still reading this but thank you for your replies over the past year, it really did help.
Updating this thread real quick.
The period of time I've had off from school is ending soon and I need to make a choice about my future. Luckily I'm in a spot I still have choices... Like do I return to uni or not? Maybe go to tafe? Is there alternate schooling? Do I work or not? Is self employment realistic? Centrelink or not? Would NDIS accept me? What supports even help this problem? Etc etc etc etc I can tell its all coming up because for the first time in months I am avoiding people yet again.
I love uni though, which is the most annoying part. I think I would find uni really fulfilling if it didn't give me a catatonic episode every semester. I understand everything and know what to do, but once assignments come around I can't move. Literally, it's just I wake up one day and can't move. Or I go to uni but I can't make myself walk to the class. One time I went to the class door but couldn't make myself walk inside and I just froze outside for a few hours. Or sometimes I've done the assignment but couldn't press the submit button. Just, it's really frustrating. The most annoying episode happened when everything went perfectly for an entire semester- I was passing every class, and then a teacher made an offhand comment. It wasn't bad, he was encouraging me to finish my last assignment. But that night I couldn't move and I failed that class even though it was my favourite one.
There are so many instances of this happening no matter what technique I try to get around it - I don't know if going for uni or tafe is worth it. Literally I've done assignments in advance and it didn't help. Like its been 5 years of this. I asked my uni there were any classes with no assignments and just tests (tests are easy because you don't have to study in order to take the test and pass) but they said no. They asked me to ask my autism assessor what supports I should recieve, but my assessor didn't know about it. I'm trying to look online but apparently 70% of young people with PDA don't or struggle to go to school. People with catatonia tend to go to the hospital instead. I'm reading a lot of college dropout stories, or people who managed ok until they hit the workforce. Zero resources of university support for PDA. So it's like, what, am I supposed to figure it out myself then? Come on.
I love university but the amount of changes required to make it work for PDA is massive. I'm wondering if there's other education possible than just uni or tafe, but I don't know yet...
Quickly updating again. My parents are OK with me not going back to uni. Just, they're mature age students this year. They've been passing classes to get higher paid jobs. I'm at home. It feels weird that my parent is coming home from school and I'm in the kitchen or whatever. They're moving forward and they find school challenging and invigorating. When I'm at school, I stop feeling all emotions and can't really remember anything or do much. I understand everything but I can't submit assignments because of that panic. But they can submit assignments, even though I'm the one who showed them how to do it. They can pass it, even though they asked for my help for their classes several times. I don't mind helping them, that's fine. But they're the one that needs help and they could pass it. I understand everything already, and I can't pass it. I can't pass it for all the wrong reasons. They're allowed to study and try new things and I can't. You're not allowed to study if you get 0%, even if you understand everything.
Where I live, there are no other alternative education paths other than uni or TAFE. Alternative schools are only available for kids. I can study easily but I'm not allowed to. I want to ask for university accommodations but they don't exist for people with PDA. I've been looking and I can't find anything and nobody knows what works and I'm just really frustrated. I wish someone would have figured it out before me but I can't find anyone saying that university helped them, because regular jobs don't help either... I know I am massively overgeneralizing but it all just feels really helpless. I feel like I've been set up to fail. I already know that going back to uni will mean I get 0%, so why am I trying? I already know a job will destroy me, so why bother? Its just a "damned if you do, damned if you don't", kind of situation, I feel. Just I wish I could actually choose what I wanted to do because right now it really seems like I'm not allowed to get a higher education because of how I was born.
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Hi Sophie M,
Thanks for the response, I appreciate it a lot.
I didn't know this, but it seems some universities have some new rules over who is allowed to recieve HECS-HELP and who can't. I'm ineligible for HECS-HELP now, so I don't know about going back. I was thinking I could somehow get accommodations for PDA, but I don't think that's realistic given the current state of things. The major I'm doing doesn't exist anymore, they're getting rid of classes for it. Even the people who passed everything just fine are not able to attend the classes they're required to graduate, because they keep cutting classes and cancelling them. So, I would likely be held a few years back anyway. Its just not worth it, not worth the money at all. Wish university was just free so anyone could just go, there would be so much less obstacles in the way. Making money from it just causes all these problems and stops students who need uni from getting anywhere. They're focusing on people doing uni for just getting a job, as if that's the only thing that's important. Education is dead honestly, like what a waste of time that was for me lol