Could anyone share their experience of burnout?

I’ve been experiencing chronic burnout for over 5 years now. It took a really long time for me to understand that it was burnout and related to being autistic. I didn’t know I was autistic initially. I just kept pushing and pushing myself to keep going and worked way beyond my limits. I had to take time off a few times but I only did that because my physical health starts to go as well when I get super burntout- I basically just end up losing so much weight, because my IBS flares up, my appetite goes and I also think stress just makes me loose weight even faster. But even when I had time off I didn’t really recover. I think I didn’t rest properly. Taking time off was unbearable because I then completely collapsed and I could not do anything which I hated- ‘fun things’ took an inhumane effort too so I preferred to do ‘useful things’ like work more. I hate being inactive so I think even when I was resting and barely doing anything I was still pushing myself too much. Not being understood by medical professionals also didn’t help- autistic burnout often gets mistaken for depression and then the advice is often to do more and to socialise etc. and when I am utterly burntout I need to just withdraw for a while as I have such limited energy- once I feel better my interests etc come back but I shouldn’t push it. I never really recovered, I basically just went from one job or degree into the next and I often didn’t feel ready at all. Thinking back I have no clue how I even managed to still work and also hide the fact that I was an utter wreck both physically and mentally. I unfortunately still haven’t properly recovered- I had to move to a new country and new PhD position at short notice over a year ago- thinking back I really should have taken a break but somehow that just didn’t seem acceptable to me at the time. My phd supervisor now is extremely kind and understanding and knew to some extent that I wasn’t well- we had worked together in the past and she was aware of the bad experiences I had over past years (unsupportive supervisor, not getting paid, funding running out etc) and also of some of my health problems and she still wanted me to join and said it was fine to start more slowly to get back on my feet. I have worked much less the past year and tried to get back on my feet. I have tried to prioritise sleep and on weekend I now force myself to stay in bed if I am still tired (i hate sleeping and would rather do things but in my exhausted state that also doesn’t work then). I have had moments where I have felt better than in years, where I could think more clearly and it is so so much better. But these moments are shortlived and circumstances have pushed me deeper into burnout again. I am starting to think I might just not be able to do this job. I would need a longer break to recover but that’s not possible without me giving up my PhD - I don’t know if I want to do that, I fought so hard to get here but I also can’t keep watching while my health and wellbeing is being wrecked. It’s harder to keep going once you spot the cycle. In addition stopping and taking a break has so many other repercussions and associated issues that need to be sorted like where to live, finances etc etc. It’s difficult. I want nothing more than to not be burntout anymore and to be able to hike and run again (I have had chronic joint issues and due to burnout and moving countries too much have never been able to get the physio and support I need to sort it). I just want to live again, not just exist in this dark dark exhausted state where I can barely think and put all my limited energy into work and can’t get joy from work or from anything else as I am too exhausted. I wish I knew what the solution is, but I don’t. Can anyone relate to this?

I’ve been experiencing chronic burnout for over 5 years now. It took a really long time for me to understand that it was burnout and related to being autistic. I didn’t know I was autistic initially. I just kept pushing and pushing myself to keep going and worked way beyond my limits. I had to take time off a few times but I only did that because my physical health starts to go as well when I get super burntout- I basically just end up losing so much weight, because my IBS flares up, my appetite goes and I also think stress just makes me loose weight even faster. But even when I had time off I didn’t really recover. I think I didn’t rest properly. Taking time off was unbearable because I then completely collapsed and I could not do anything which I hated- ‘fun things’ took an inhumane effort too so I preferred to do ‘useful things’ like work more. I hate being inactive so I think even when I was resting and barely doing anything I was still pushing myself too much. Not being understood by medical professionals also didn’t help- autistic burnout often gets mistaken for depression and then the advice is often to do more and to socialise etc. and when I am utterly burntout I need to just withdraw for a while as I have such limited energy- once I feel better my interests etc come back but I shouldn’t push it. I never really recovered, I basically just went from one job or degree into the next and I often didn’t feel ready at all. Thinking back I have no clue how I even managed to still work and also hide the fact that I was an utter wreck both physically and mentally. I unfortunately still haven’t properly recovered- I had to move to a new country and new PhD position at short notice over a year ago- thinking back I really should have taken a break but somehow that just didn’t seem acceptable to me at the time. My phd supervisor now is extremely kind and understanding and knew to some extent that I wasn’t well- we had worked together in the past and she was aware of the bad experiences I had over past years (unsupportive supervisor, not getting paid, funding running out etc) and also of some of my health problems and she still wanted me to join and said it was fine to start more slowly to get back on my feet. I have worked much less the past year and tried to get back on my feet. I have tried to prioritise sleep and on weekend I now force myself to stay in bed if I am still tired (i hate sleeping and would rather do things but in my exhausted state that also doesn’t work then). I have had moments where I have felt better than in years, where I could think more clearly and it is so so much better. But these moments are shortlived and circumstances have pushed me deeper into burnout again. I am starting to think I might just not be able to do this job. I would need a longer break to recover but that’s not possible without me giving up my PhD - I don’t know if I want to do that, I fought so hard to get here but I also can’t keep watching while my health and wellbeing is being wrecked. It’s harder to keep going once you spot the cycle. In addition stopping and taking a break has so many other repercussions and associated issues that need to be sorted like where to live, finances etc etc. It’s difficult. I want nothing more than to not be burntout anymore and to be able to hike and run again (I have had chronic joint issues and due to burnout and moving countries too much have never been able to get the physio and support I need to sort it). I just want to live again, not just exist in this dark dark exhausted state where I can barely think and put all my limited energy into work and can’t get joy from work or from anything else as I am too exhausted. I wish I knew what the solution is, but I don’t. Can anyone relate to this?

Ann :) said:

Taking time off was unbearable because I then completely collapsed and I could not do anything

One of the things that helps is keeping routines. Work can also be low emotion and relational stress.

You have a controlled environment, you know how to interact, the rules are clear, you don't have to think too much.

It gives structure to the day. The problem is the workload, but if you can reduce that, work can help as it keeps you going.

I had a supportive manager last year else I would have had to take some time off.

Hi Ann :) 

Thank you for sharing your experience. I crashed six months ago but can see I was on the slope heading towards it for 18 months prior to that. I’ve spent many years in a demanding profession and like you, have really pushed myself, initially because I hadn’t yet had my diagnosis and subsequently because I didn’t really want to accept it. I’ve not been able to work for these past six months and worry that I may not ever get back to anywhere near how I was. Hence feeling rather useless now and facing an uncertain future. 

It’s great that you’re doing your PhD but you do need to prioritise your wellbeing. I had a PhD proposal accepted a couple of years ago but didn’t proceed with it (I will do it at some point!) So I understand you wanting to complete yours because it does take a lot of work to get there. But it’s not a failure if you do have to take a break from it and work on your recovery. 

Sounds like we both need to be a bit kinder to ourselves…

This is a great group. I’ve only just reached out but I’m so glad I did. There are some wonderful people here, offering support

This is a painful read as I relate so much. Being a mum and trying to work fulltime has been punishing, as I tend to work 8.30 -3pm, get the kids and take them to all their after school activites, help with homework, make dinner, put them to bed, then 9.30-11.30ish make up my work hours.

When I was in my previous job, I'd get so into what I was doing, I might not finish till after midnight, and a couple of years I was chair of the parent council at the school, so would then have to switch over and send any emails or messages to organise fundraising events. It's very easy to just keep going till you can't, I did step down from the Chair position as I couldn't do it any longer, and at one point managed to drop down to part time for a contract so I didn't have to work at night, but new contracts came and I went back to nearly full time -though I did manage to keep Friday afternoons off as my kids school finishes half days, and trying to make up 4 hours on a Friday/ Sunday night was too much.

It's hard, as you feel you should be able to do it all, to prove you can. Being in a male dominated industry, you kind of feel you need to work harder (which I imagine is like research to be taken seriously). But it's not really possible without something giving like health as you say.

Since summer, the kids have been feeling it too, so we cut activities right back and it's helped me, as they are big enough to let them rest and play games, I can do more work in the afternoons so have to work less in the evenings, and I went back up to full days on Fridays as they can chill then. (I should note I have a supportive husband, who does a lot of the housework to keep us functioning, but last 6 months he was working crunch hours too so we really were all falling apart).