Published on 12, July, 2020
Four decades of trying to get on. Fourteen years of school. Two courses of CBT. Surely, an abundance of clues given off by me… and nothing. *I* had to be the one to suggest autism. But not before all those decades of tacitly assuming and resolving that all the stress and anxiety were things I just had to be clever enough and strong enough to push through. Desperately trying to obtain and cling on to a shred of credibility, despite my weirdness. Being failed over and over again by a lazy, vacuous, uncaring, one-size-fits-all system. Having such a low opinion of myself for thinking I was a pathetic failure. And feeling so humiliated at being alienated by the ‘normal’ majority that this precious society is designed for. Trying so very hard to get on and succeed… denigrating and trying to push past my weirdness and difficulties. And internalising such nasty, cruel thoughts. Hating myself for being weak, stupid, gormless, needy… and projecting that onto strangers, because they represent the normal majority who seem to have it so easy by comparison and are so unguarded and homogenous in each other’s company. Is it any wonder I felt “f*** you, then” and kept them at arm’s length? And that was before covid AND the cladding scandal came along to terrorise me simultaneously, as I lived alone in this flat. You’ve really done it this time… you expect me to be like you? Shrug a shoulder and casually go wading back into social mixing despite the risk that remains? Like I cannot possibly do without you? After what you’ve done to me? Go f*** yourselves. That’s how I feel. I’ve had enough of the arrogant, flippant, lazy, casual, offhand, uncaring, vacuous, one-size-fits-all attitude. It got very old a very long time ago. And now, with this toxic, non chalant “we have to learn to live with it” attitude… they just expect me to swallow that? They expect me to need THEM so much that I’m prepared to risk getting long covid for the ‘privilege’ of their company in this shallow consumer culture that we cannot possibly do without? Either that or they expect me to be so flippant, casual or in denial about it (LIKE THEM) that when BORIS (that well-known philanthropist and teller of truths) comes on TV and says “you don’t have to wear a mask any more!” I’m supposed to be like them and say “oh, OK, great, let’s all get down bar and ‘ave a f***in’ brew!”? Er, no. You’ve really done it this time. How dare you expect me to come gormlessly sauntering back to your society after everything you’ve done to me. Shove it. I’m out.
I don't enjoy being unwell as such, but it has one plus - colds and flus act as a temporary anxiety suppression field - there is just zero surplus energy for the parasympathetic nervous system to run in parallel with life support essentials. Despite the brain fever, it's as close to NT normal as I'll ever feel, and is like a holiday from myself. When I start to get well again, the surge back to my 'normal' can be quite horrible - like getting the bends or something. Not re-acclimatising to the constant fear/overstimulation/discomfort as quickly as the recovery has in mind for me.
Only when they are sick! Nobody should be working when they are sick. Even if it is not infectious, their work could be impaired and their recovery could be impaired so they are unwell for longer. If they do go in and infect the remaining employees they have to work while sick too. I know there are some work situations which it is harder to get cover for and the work can't just wait or be done from home, but where that is possible it should be and the default seems too much to be for sick people to work than for sick people to be at home recovering. Of course then people will cheat the system, nothing is ideal, I just hate that people are working while sick!
Yes, but then the argument is that if employees are actively encouraged NOT to go into work, the workload for the remaining employees increases.
That is partly what i meant by employers ought to not discourage people from staying home when sick, it is a moral outrage that people cannot afford to not work when sick.
I know there are some people who simply can't afford not to work when they are unwell (for example, those that are self-employed). There is a belief that if one should catch something from someone that is soldiering on, it will help to build up one's own immunity to that particular strain. However, as I don't enjoy being unwell (Is there anyone that does?), I would prefer those people to keep as far away from me as possible. Sometimes though, it is unavoidable.
Wow - I feel the same .
Autonomistic said:There was a huge sense of loss for how different things could have been if only someone had picked it up earlier in my life.
I can very much relate to this feeling. Although it's impossible to know exactly how one's life would have turned out, it's as though one ends up going through a grieving process for the life one might have had if it had been picked up at an early age.
There is this "work ethic" thing which tells people they ought to "soldier on through" and go to work even when sick, so they get to feel virtuous, failing to realise that they are a) spreading their germs so others will suffer, b) impairing their own ability to work well so what work they do may be of lesser quality, depending on what it is, c) combining a and b their work colleagues will likely get sick and feel obliged to work through, also producing potentially impaired work. If I was an employer instead of having a system which rewarded people for coming to work even if sick I would want them to stay away if they were infectious!
I agree about trying to protect other people. I have never understood why people don't try to avoid mixing with others when they have something infectious. I feel guilty if I pass something on to someone else.
Yes, I agree. I find their rhetoric about helping "those who need it most" absolutely sums it up. In that expression they can get away with giving an impression of caring, but only a little unpicking reveals how much that leaves those who need it second most out in the cold! Oh, you only have one leg, but look, this person with no legs needs help more so you can go jump! Oh, you can't jump with only one leg? Tough! Just be glad you have a leg! Oh, here is a person with no arms or legs - now the person with no legs is not the most in need of help so they can go jump!! We should not be helping only those who need it most, but anyone who needs help. But I doubt anyone here would disagree with that!
It made me so cross when they missed the opportunity to lead by example and instead agreed with the angry masses that mask wearing was an imposition rather than a common sense protection. And what protects lives of the most vulnerable also reduces general low level suffering of those masses, surely nobody actually enjoys a cold? Especially when they are not even taking time off work but have to "soldier on through". And many people I know who had covid even recently fully vaxed said it was very unpleasant.
I suppose that's what you get when everything comes down to the bottom line, money! Although even then I suspect they are actually getting a lot of things wrong about how economics really works, it seems to be a bit of a dark art that nobody really understands. I am reminded of a quote (or paraphrase most likely as my memory is imperfect) about quantum mechanics - if anybody thinks they understand quantum mechanics that proves they do not understand it!
I agree. Reducing the spread of Covid - with simple things like mask wearing in crowded places - is definitely a good idea. But in this country there seems to be an ‘all or nothing’ approach to preventative measures against Covid. Many people (such as immunocompromised people) are still vulnerable Covid. We should be more considerate as a society - if we were we would save lives. Every life MATTERS - but it’s as if the U.K. Govt has decided that a certain amount of deaths from Covid is ok. But every family that faces that loss will feel huge suffering. Wearing a mask really isn’t that bad - if it saves even a few lives surely it’s worth it?! I feel attitudes in the U.K. to the vulnerable are quite callous. High levels of Covid increase the likelihood of new variants. Other cultures are ok with mask wearing - because they have a more collective mentality - but western capitalist countries ar3 very individualistic and selfish. It’s very sad. My eldest has suspected crohns and some of the drugs for that are immunosuppressant. People should be more considerate of the health of others. But there you go - the U.K. Govt does nothing to encourage a caring society.
That's all very well for the majority who have no particular vulnerability to covid or long covid, but that is not the case for all of us. If I had stopped to think about flu before covid I had reason to be more troubled by it than I was!
What annoys me most is that I had hoped that attitudes might change such that people realised that with a bit more care, wearing masks (for those who can tolerate it) in crowded areas, especially where there is a lot of mixing of people not in regular contact, hand washing, keeping a reasonable distance etc might actually lead to a reduction in other airborne winter viruses. And staying home while sick and infectious! Why would people not see the benefit of not spreading disease around? Why do we just expect to have x number of colds plus flu and covid every winter?
The attitude of people who just can't be bothered to protect the vulnerable sickens me, people are still dying of covid and a new variant could arise any time. And people seem to think the vaccines stop spread, they don't. Nor do they stop long covid. They don't do nothing but neither do they do what was hoped, yet people act as if they do. And I do worry about the long-term effect of the not benign spike proteins they cause the body to make.
If I have to catch covid one day I would rather delay it until there is some kind of better understanding of how to avoid or at least treat long covid. That is my personal concern coz if I got that on top of what I have now my energy levels might be in the negative!
Arx said:And now, with this toxic, non chalant “we have to learn to live with it” attitude… they just expect me to swallow that? They expect me to need THEM so much that I’m prepared to risk getting long covid for the ‘privilege’ of their company in this shallow consumer culture that we cannot possibly do without?
You know this is as good as it gets right? Covid is never going away just like flu, the common cold and all the other diseases you can catch jut by sitting on the same bus as someone. I'm not here to say anything good or bad about your friends but tbh if you think your life outside home is more in danger now than before the pandemic because of covid ... that just not born out by the facts.
It is an almost statistical inevitability that you will catch covid eventually. If you haven't already and been asymptomatic. You will almost certainly be fine as most people who caught it, especially those who had been vaccinated, were. It's no more rational to hide in doors from covid now than it was to hide indoors from seasonal flu before the pandemic.
ah you have to let go of that, i have been like that many times... one of the first examples i can think of was when i was in primary school and asked to play with the other kids who were playing tag and they refused... then came to invite me later and i told them no and they had their chance and to bog off and stayed alone. i think its a self defeating attitude in our head that we all fall for that is a part of ourselves that we must overcome to make a change and perhaps steer to a better course.
An amazingly powerful piece of writing. I can empathise with much of it. I suppose the thing we have to accept though is that NT=skewed society is not something being done *to* us on purpose, it's simply the current distribution of ratios that the evolutionary trajectory presently allows for. Not at all comforting in terms of lived experience, and frustrating as all hell to feel the uncomfortable outsider in almost every situation, with only solitude and sanctuary as the only way to de-tox, but an immutable fact nonetheless. We'll always have to 'cope' as best we can with it, and at least understanding that there's a good reason (that the die was cast from the beginning, we haven't failed some test that began with an equal footing) can help us be more at peace with ourselves, even while the challenges remain, wholesale.
Your words resonate with me strongly too.
Arx said:Four decades of trying to get on. Fourteen years of school. Two courses of CBT. Surely, an abundance of clues given off by me… and nothing. *I* had to be the one to suggest autism.
That was something that really got to me post diagnosis. Looking back it was so obvious! There was a huge sense of loss for how different things could have been if only someone had picked it up earlier in my life.
Arx said:But not before all those decades of tacitly assuming and resolving that all the stress and anxiety were things I just had to be clever enough and strong enough to push through.
Decades of trying to push myself through my anxiety resulted in massive burnout. Yet that attitude prevails from some even post diagnosis. When the issues are sensory due to autism no amount of pushing through that is going to help. It will just lead to increasingly frequent meltdowns, shutdowns and ultimately complete burnout.
Arx said:Being failed over and over again by a lazy, vacuous, uncaring, one-size-fits-all system. Having such a low opinion of myself for thinking I was a pathetic failure.
No longer feeling like a failure is one huge positive that comes from being diagnosed, whatever stage in life. If is just a pity that self esteem is often totally destroyed before that finally happens.
I so relate to what you’ve written here. I feel very similarly to you. I haven’t got the energy to write a long reply here now but I just wanted to express solidarity.