Published on 12, July, 2020
Something I've posted about before, I know, but because of the deep seated and longstanding issues within my family, I'm always on the lookout for further information. Now, I've just been watching this video on "The Burnout Recovery cycle", which admittedly will be useful to some to enable them to plan and cope. https://www.youtube.com/watch?v=aG_41uh-WAIAnd yes, It might have been useful for me in the past and I can see how it works for a well motivated individual like Paul Micallef. But, like many of the speakers and advocates I follow, there he is looking well groomed, organised and very much in control of his life. I accept that appearances can be deceptive and we don't know what goes on behind closed doors in a person's private life. But even taking that into consideration, this still feels very different from our family problems with burnout. All the speakers and autistic advocates I can find seem very well informed and motivated, not to mention very well groomed and presentable. And within our family we see a very different picture. People who opt out or withdraw altogether, never rejoin society, major difficulties with personal hygiene and too burnout to do very much at all other than very basic things like eating and going to the loo. Motivation is low, especially given the mental health issues that then accumulate (unhelped by services who have been able to offer nothing - we've tried) and anything else is understandably a low priority (if basic survival is a problem, you're not going to be thinking about how greasy your hair is, for example). And they're not really in any position to use self management strategies such as those outlined in this video. If they were, they'd already be well on the way to recovery, with only minor support from others. 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)? How can we best support someone in this situation? 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? It's very hard not to feel desperate about this.
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.
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.