The burnout problem

Yes, the more "amenable" version eludes us too.  Its existence only seems tantalisingly close when I watch such videos which, of course, I feel compelled to seek out because we're so desperate.  

Your experience sounds terrible too and I think it can all be compounded through late identification.  Certainly within our family not being identified beforehand made it more likely to happen and ensured it was misdiagnosed when it did.

Over the years I also pushed myself closer and closer to it through my constant efforts to shape up and be a good neurotypical.  And all the time I thought I was somehow improving myself and becoming the ideal employee!  

So glad you came through though, both for your sake and because your story gives hope.  

I not sure that I have any specific questions but my general one would be whether anything anyone else did either helped or hindered you. 

Plus if anyone has a handy video in the same vein as the "Autism from the Inside" one but on "Burnout from the Outside" that'd be great.  I'm basically looking for anything for parents, carers and friends.  

Hi JB,

I'm so sorry that things are still tough but you are, and have been doing the absolute best you can.  I wish I had solutions but alas I don't.  All I can do is send love and hugs to you and yours.

H :-)

Jenny Butterfly said:

episodic burnout that is amenable to self help to almost total collapse and withdrawa

pretty much like autisitc people, all kinds and variaties,

I've never had a 'amenable' version, until to many traumatic events coincided, and than I had a 'total collapse' one, for 8 weeks, and recovery took 1 year and 9 months

it was before official diagnosis, I selfidentified during it, and in the end I was eating dry pasta because I had nothing left to eat

I spent 95% of those 8 weeks in bed sleeping and in half awake state, but when the thoughts about recent events stopped looping over in that paranoidal way we do,  and the thoughts to end it all ended, I decided I have to go back to work, or I will just starve to death in bed

then it was year nad 9 months of zombie mode, operating as if I had 3 spoons instead of 12 daily available

Jenny? i managed to get back, so if you want to drop more detailed querstions don't hesitate

Sounds familiar!  I have been in similar situations then had to turn back as the sense of alienation and struggle to function seemed to take over.  And then my driving ability, which has always been problematic for me, would be barely sufficient to get me home to safety. 

Honestly, I sometimes wonder whether I can really have a "simple appointment".  Maybe my mind turns it into something else? 

Yes, I think what we're experiencing as a family is at the extreme end of the bellcurve.  And change over time is very slow, imperceptible at times, such that things have only gradually felt a bit safer and more stable over years, although with no socialising or connection with anything outside the home at all and very little inside, which is even harder to bear. 

The struggle is referred to in the video but, yes, I imagine this varies quite a bit between individuals, although with some commonality.  I always struggled in more formal workplaces and eventually had to switch to part time working, which still felt like far too much at times.  I often returned home feeling crushed and exhausted but without understanding why (although now, 20 years on from some of those disastrous jobs, I have more understanding).  

I can definitely relate to what you're saying about anyone looking at you and making assumptions.  I often functioned very well in certain areas so this functionality was then expected across the board, with a complete lack of understanding and lots of harsh judgements when I failed, sometimes disastrously.  And I appeared well groomed and organised too, although much of this was part of my mask, my strenuous efforts to stay acceptable and remain on the payroll, even while I was crumbling inside and spending evenings and weekends devouring self help books or going on courses I thought would be helpful and rid me of what I imagined was a temporary inability due to a very isolated and poverty-stricken upbringing (with autistic parents who were great, gentle, loving people but who obviously also struggled to make a living and maintain a household). 

I still have days when I can do hardly anything too.  What has changed, though, is that I'm much gentler and more accepting with myself and slowly dismantling the years of external judgements and conditions of worth (usually built around some kind of internalised ableism).  I do often resent life being such a slog though. 

Many thanks for your thoughts on this.  I maybe need to watch the video again and to be honest it's something that I personally would find helpful and wish I'd had access to in my 20s. 

My impression was that, for Paul and also many others who are or who become good self managers, burnout is a setback requiring a certain amount of down time and self care, but that periods of total collapse and withdrawal in which even basic tasks like bathing are neglected are thankfully brief.  I'm not saying it's then easy, of course, and I've experienced several of these episodic burnouts over my life, but that this seems poles apart from what we're experiencing within our family in intensity, duration and possibly also in the ways it can lead to or aggravate other mental health issues. 

This also typifies the videos I can find on burnout, in that the focus is on self help but there's little in the way of advice for families or carers.  I guess in this case the clue is that this is "Autism from the Inside" so therefore also burnout from the inside, and, as a family, we're left on the outside.  Moreover with a loved one who is in deep, chronic burnout and not in any position to adopt or even listen to these strategies themselves. 

This video does refer to longer term burnout but to me the thrust of it is to recognise the pattern then match or preempt it with a recovery cycle, incorporating play as well as rest.  He refers to "Zombie Mode", which sounds very familiar to me, but it sounds brief and, again, more akin to what i've experienced myself rather than seen in the family members I'm desperate to support.  And the recovery cycle in his case involves friends and activities - again, something I'd have been able to incorporate in my own recovery cycle but not really accessible to someone who, say, has basically sat in an armchair for 3 years and lost all contact with the outside world or who has retreated into one room, in a greasy, dishevelled state and only felt able to play computer games for > 8 years.  Plus once it reaches 10 years, well, is it even still possible to refer to it as a cycle rather than a permanent state of affairs from which we fear the person will never be able to emerge?  

I really appreciate you sharing your own experiences and this does give me some hope.  And I fully agree that this can be a highly individual experience that in its very nature is likely to be baffling and upsetting to other family members who can maybe never fully understand - it's possibly very alien to their own experiences, after all. 

Honestly, though, I feel quite desperate to have that lengthy and insufferable War and Peace style book on burnout.  I would literally wade through any information, however tedious and laborious, to put myself in a better position to support someone through this because, however insufferable that may feel, our situation here seems vastly more insufferable.   It feels as though there is no suicidality at least (although I can't absolutely know due to the lack of communication) but there is still a huge loss here.  And, given how things are, I don't think I'm being overly dramatic in saying that so far 10 years of life have been lost to this.  

We do have a kind of gallows humour going on around here.  Also our own self help strategies to get us through and keep us as strong as we need to be.  That much is good.  But it's also true that we have little clue as to solutions here so anything that has helped other families is definitely of interest.             

I had a burnout today, after a simple appointment in Belfast today. My plan was to drive to Antrim; to get a cheaper bus, which was fifteen minutes late. But I had ample time to be on time for my appointment.

Then I had a recommendation of a Café where you receive a free coffee if you buy a record; I bought two LPs. But the location I was walking at was unfamiliar with me. Then I was trying to get to a train back to Antrim in good enough time. Then the drive home from Antrim was super-stressful. (I wore a coat, as it rained this morning, but it warmed up after noon)

I haven't got time to watch the video today, but I think that burnout is maybe a spectrum rather than a binary yes/no thing.  From the age of about twenty to thirty, maybe longer, I had severe burnout, but even then there was change over time.  I never quite neglected my personal hygiene in the way you describe, but I came pretty close.  I was at home all the time, not working (albeit at times trying to get degrees), rarely socialising etc.  Over time I slowly found a way out of it, but I still struggle with a lot of stuff and need support.  I struggle in particular in the workplace, can only work a couple of days a week, and am lucky to have a relaxed boss who puts up with my mistakes.  Today I feel hardly able to do anything and am struggling a lot after a difficult day yesterday.  Incidentally, anyone looking at me would probably assume I'm well-groomed and "together," but often I feel far from that.

The 30 seconds of this video from 3:30 to 4:00 is post-prophetic to me.  It describes my experience.

Sincere thanks for bringing this video to my attention.  I will probably use it to try and help explain my life to some people who haven't been able to understand / believe my past attempts at explanation but who might be able to further their understanding with this type of "Dr Youtube" format.

In terms of your comment about the video - I'm a bit confused by your statement that;

Jenny Butterfly said:

So...  Is this really ALL burnout?  Should the term have subdivisions (e.g. to cover a range from brief, episodic burnout that is amenable to self help to almost total collapse and withdrawal)?

My understanding of the video is that he DOES refer to small episodic burnouts AND long-term / mega burnouts?

In terms of your question related to this video;

Jenny Butterfly said:

And where are the videos from people who've recovered from, say, years of burnout and needed significant support in the meantime?  Is there anywhere that families can turn for more specific advice and guidance? 

I am in the latter stages of recovery from a very substantial burnout.  Certainly measured in years - but it would be folly to try and put a precise time on it.  Complications regarding the peculiarities and particulars of my life undoubtedly muddy the situation.

Based on my experience, I can fully understand why you (and I) have failed to find any videos regarding recovery from years of burnout.  I'm really not sure how one would (or could) tackle such a task.  It would be even longer than 'War and Peace' and substantially more insufferable.  If not that - it would be trite nonsense.

I feel uncomfortable expressing more to you in public forum, but really want to help if I can because I know just how much;

Jenny Butterfly said:

It's very hard not to feel desperate

I expect that profound and prolonged burnout is a highly personalised and private experience for each human - but if you want, ping me a private message and I'll do my best to help you in any way I can with information about my own experience.

What I can tell you here, is that I managed to survive through my darkest months and years despite being decidedly "average" in the grander scale of things - I'm not especially bright and I'm certainly not especially well resourced.  I've now got plenty of metaphorical scars, caused extensive collateral damage and I still have a monumental 'clean-up' operation to conduct.  But I'm here !  Yay!!!!!!

If I can get this far, I'm sure you and your family can too.  Try and keep the faith that EVERY problem has solutions, even when you have absolutely no clue what they might be.  Stay sane.  Try to laugh about it - I found it really helped to laugh at my own hopelessness - it released a lot of inner tension.

I hope this helps you a little, and thanks again for drawing the video to my attention.

Kindest regards to you and your family.