Thank you so much for writing this. I am a single parent, business owner, and I do social justice support work in my community, and for the last 5 years I've been using drugs to numb physical pain and give me the energy to do all the things. I'm 42, and this year is my Lost Year. I quit drugs and all my volunteer projects. I set boundaries for myself at work to manage my availability. I'm laying in bed a lot this year. I feel shame that I'm not able to be the social justice hero that I got so much validation for and I'm using some of my resting time to unpack all those layers. I'm reading Laziness Does Not Exist right now and it is so helpful. I appreciate your writing, thank you! In many ways, this is actually my Found Year.
oh my goodness, thank you for your comment. I agree that Lost Years can often be the Found Years in the end... it was because of my Lost Year I figured out I was Autistic.
As I try to recover from Long Covid, I know that I wasn't able to work full-time before (I was already disabled) and for sure I won't be able to again. Living in this society means that my worth and the rationale behind not working full-time will always be questioned. I need your posts and your books to tell myself it is not for everyone, and there is no point in conforming to a normal I do not even respect or agree with. Thank you
Every year since 2019 has been a Lost Year for me. I only wish there were people to help me through the process of sustaining a schedule as a full-time writer like the ones I had when I was going to school.
this made me feel like bursting into tears and its why I want so desperately to get an at-home remote job, get my education, and work a computer science job so I can manage my boundaries around work, work only 20 hours discreetly by lying and cheating for the sake of my health--so I have time to write, hang with friends, volunteer. It seems like such a precious dream and I know firsthand my father and many family members who work far more than that, and the tolls it had on their life. Itd why I'm also praying for the surge of unioms because we deserve to be paid a living wage for working less.
Man, I'm sure it's not the intent, but it's hard not to internalize some discouragement surrounding this. Maybe it's because I have a notion that more forgiving self-employed kinds of schedules and work lives are only really available to those in academia or with a certain level of education, and that the rest of us may just be stuck being burnt out for survival.
I've finally found a full-time job in Customer Service that I am able to mostly sustain (while it"s SUPER draining), but struggled to hold anything down for years, and even still find that I'm able to engage even less with the shell of a life I had when I was less securely employed.
Granted, I do not have a formal Autism dx or anything, so I don't really have access to many accommodations either.
I suppose I'd ask if you have any tips for trying to grow towards an employment situation that looks more like yours without a post-graduate degree? Mainly just trying to find some hope that I may not be stuck in this loop forever. I feel like there's so much I could contribute to the world if I could carve out an opportunity, but maybe I just need to learn to live within and accept these parameters?
I am working on some (much longer) writing on this, for the sequel to Unmasking Autism I'm currently drafting. There are limits to how helpful my perspective is, because I do have so much privilege in this respect, but I am interviewing lots of Autistics who are on disability benefits, who live with family, who live in vans or boats, and who otherwise stitch together a life that's meaningful and okay outside of the mainstream full-time capitalist structure. I think that is the best option for many of us...
Thanks so much for the reply! I agree with Morgan, that's super cool to hear. I'm actually living in Chicago as well, so it was super cool to find Unmasking Autism, and it was a revelatory experience for me that helped me take the suspicions I'd had for years more seriously and learn to start honoring myself for who I am a bit more. I sincerely appreciate the work you've been doing on a number of fronts!
This is great to hear! I'm a caravan-dwelling part-time working autistic. Full time work has felt impossible for some years now. Thank you so much for this article. And Milo, today hearing you on the discouragement factor. I started on low paid freelance sites (no particular education required) and worked my way up from there.
Seconding the freelancing, actually -- started on Elance (now Upwork) when I was in graduate school and had no credentials. I wrote SEO blog posts, helped review people's homework, edited self-published books...back then the site took a smaller % of payments, so it was a better option than it is today, but it is still possible to get at least some side hustles going from your home (or your bed, in my case). Sometimes you can convert clients on there to paying you directly so you don't get hit with the fees. It's not perfect, but it's an option for some.
Back in 2007 I realized life as a full time public accountant wasn't working for me when I dozed off at a stoplight on the way to work one morning. I also had developed intense pain in my shoulder and sometimes my thumb (which seems like an inconsequential joint until you try to hold a mug of coffee). I was lucky enough to land a part time bookkeeping work from home gig that paid enough to allow me to work about 10 hours a week while parenting 2 young children. I never even noticed at exactly what point the shoulder pain disappeared, but over a decade later it has never returned and I am convinced it was my body's way of expressing its state of overwork. I work about 15-20 hours a week now and as a new empty-nester I sometimes wonder if I should return to full-time work (I could easily do this at the same company I work for now). The mere thought of this exhausts me though, and when my hours creep over 25 (as they did when I covered for a coworker on maternity leave) I realize that it isn't a viable plan for the long term. My supervisors often comment that they are amazed at how much I manage to get done in the hours I work, and I think it has less to do with any innate speed on my part (I was ridiculously slow as a public accountant) and more to do with the fact that a well-rested brain is much more quick and agile.
I had major work burnout this year. At the same time learned my teen is NB and autistic. I’m more convinced than ever that I am autistic as well as my sibs, mom , etc. I see it as a positive. I’m late 40’s and have given up on career striving. Recently accepted a good enough job after a nightmarish foray into a management. Wish I could work part time but carry very good health insurance for myself, kids and ex. We’ve got to fix health care in this country.
Thank you for writing this! My "lost year" started in 2009. I'm still in it, and over the years, have resigned myself to the knowledge that I'm not going to get well. This is my life. I used to work 60-hour weeks habitually, and thought I had to. I didn't know there was this thing called "boundaries." I also didn't know I am Autistic. I only learned that a few years ago. The doctors never did figure out what's wrong. I am fairly sure I just plain burned out. When I look back, and reexamine my life from this new perspective of being Neuroqueer, and all the struggles I had, and how much I was masking without even knowing it, I can see how things couldn't have realistically ended any other way, but eventually crashing and burning. I wish I'd learned more about myself in time to prevent it. I didn't, but I hope other people, reading what you've written, will learn that there's another way to live before they've ruined their health forever, like I did.
I just started following you here on Substack (followed you on the bird app for several years, and Laziness Does Not Exist gave voice to everything my body has known for decades) Reading these comments tells me your hypothesis that 40 hours/week is a sickness is absolutely correct.
I was saying the same thing SO many years ago, and my friends and loved ones laughed at me and told me I was spoiled and lazy. (At the time I owned two part time businesses, worked full time, was trying to get back into making music, and was a passionate home chef - so *obviously* lazy)
Thank you for repeating this over and over: it is not us; it is this economic and social system that is sick.
My first lost year was in 2012 when I got pneumonia. I got better, but, I fell into another lost year in 2021 that's been drifting into the current time.
Thank you so much for sharing your experience. I don't feel so alone in not being able to physically work the hours that our society expects. And especially not feeling like I can both work and talk to people.
Ahhhh! My son and his partner were vending at MFF this year! I would be so amused if you two had encountered each other.
And also, I related to all of this so hard. I finally accepted my disabilities this year and stopped working in early June. I find just existing to be so tiring some days when I have more things to do than other days that I wonder how I ever managed to keep a "full time" job as long as I did, but then, I wasn't ever *actually* working full time at all and I had no energy outside of what hours I did work to do anything else. I have so many "lost years."
I'm in the process of trying to be approved for SSDI benefits now and I keep worrying some doctor will be like, "you seem fine to me," and 1) I'm *not* fine and 2) I'm *really, really not fine* when I'm forced to work.
Kudos on doing your own narration! I did corporate training voice-over work for years and can relate to how tiring and unnatural it feels.
Man I feel bad I can’t even read this because it just feels like hearing someone who won the lottery talk about how hard it was to work for a week which I know probably isn’t what was meant. There is zero path for me to live a life where I am not working bad jobs full time + or financially dependent on someone else who gets decision making then in my actions. I don’t even know how to get a job outside of retail at this point. I feel sick and miserable all the time and am getting to where I find having kids to be fucked up because you’re bringing them into the world to exploit others or be exploited. I cannot say with words the level of exhaustion and misery I feel on daily basis.
So interesting and well written. I wrote my master's dissertation on how neoliberal capitalism is a form of chronic illness and distorts our sense of time and space to force us out of society!
No doubt that work culture needs to change and we all need to be working fewer hours. However, it's easy for us chronically ill folks to project our sickness onto others and imagine full-time workers are suffering immensely even if they aren't. I constantly worry for my spouse because she has a full-time job. I ask her all the time if she's burnt out and have a hard time believing her when she says no. After many conversations about this I've had to accept that people have different energy levels, and just because I couldn't do her job doesn't mean it's abject torture for her.
If possible we'll try to save for an early retirement for her. But my inability to tolerate anything but part-time work due to my disabilities may mean that we can only afford a regular retirement. Just because full-time work would put me in the hospital doesn't mean it's that way for everyone at every company. My partner's line of work has a busy season and a really slow period that allows for recovery. And there's a fair bit of flexibility that allows for work-life balance.
For my mental health I've had to stop projecting my symptoms onto her because it was making me feel incredibly guilty about her being "forced" to work a full-time job. I've had to trust her when she says it's something she can handle and not an untenable situation. And if she burns out at some point, we'll try to adjust our lifestyle downwards, maybe by living in a van or trying tiny home living. I've offered that as an option to her now, but she'd rather work more and have a normal sized house. Just wanted to post this in case other disabled people feel this same guilt and can relate.
What you said about having to become the conniving rogue in order to secure your health really resonated to me. I have worked in the entertainment industry and food service industry for my whole adult life, and both will take everything you can give and more. I've had to become strategic about how I maintain boundaries with work, at times. Even in places that I set firm and explicit boundaries at the start, there's an inevitable upward creep in expectations. They take a little, I take a little. It's taken a lot of work unlearning shame (thanks for your writings on the subject, by thy way) to realize that it's not immoral of me to do so, especially when you stack it up to the moral offenses of employers. It seems clear to me that the ways I'm taking advantage of employers/systems will never equal out to what is being taken from me, but it at least gives me a little personal satisfaction and peace in a completely draining environment.
I really appreciate your outlook on so many things. I find your work relatable and easy to digest. It resonates with me on multiple levels. Thank you.
Thank you so much for writing this. I am a single parent, business owner, and I do social justice support work in my community, and for the last 5 years I've been using drugs to numb physical pain and give me the energy to do all the things. I'm 42, and this year is my Lost Year. I quit drugs and all my volunteer projects. I set boundaries for myself at work to manage my availability. I'm laying in bed a lot this year. I feel shame that I'm not able to be the social justice hero that I got so much validation for and I'm using some of my resting time to unpack all those layers. I'm reading Laziness Does Not Exist right now and it is so helpful. I appreciate your writing, thank you! In many ways, this is actually my Found Year.
oh my goodness, thank you for your comment. I agree that Lost Years can often be the Found Years in the end... it was because of my Lost Year I figured out I was Autistic.
Oh I love that so much.
As I try to recover from Long Covid, I know that I wasn't able to work full-time before (I was already disabled) and for sure I won't be able to again. Living in this society means that my worth and the rationale behind not working full-time will always be questioned. I need your posts and your books to tell myself it is not for everyone, and there is no point in conforming to a normal I do not even respect or agree with. Thank you
Every year since 2019 has been a Lost Year for me. I only wish there were people to help me through the process of sustaining a schedule as a full-time writer like the ones I had when I was going to school.
this made me feel like bursting into tears and its why I want so desperately to get an at-home remote job, get my education, and work a computer science job so I can manage my boundaries around work, work only 20 hours discreetly by lying and cheating for the sake of my health--so I have time to write, hang with friends, volunteer. It seems like such a precious dream and I know firsthand my father and many family members who work far more than that, and the tolls it had on their life. Itd why I'm also praying for the surge of unioms because we deserve to be paid a living wage for working less.
Man, I'm sure it's not the intent, but it's hard not to internalize some discouragement surrounding this. Maybe it's because I have a notion that more forgiving self-employed kinds of schedules and work lives are only really available to those in academia or with a certain level of education, and that the rest of us may just be stuck being burnt out for survival.
I've finally found a full-time job in Customer Service that I am able to mostly sustain (while it"s SUPER draining), but struggled to hold anything down for years, and even still find that I'm able to engage even less with the shell of a life I had when I was less securely employed.
Granted, I do not have a formal Autism dx or anything, so I don't really have access to many accommodations either.
I suppose I'd ask if you have any tips for trying to grow towards an employment situation that looks more like yours without a post-graduate degree? Mainly just trying to find some hope that I may not be stuck in this loop forever. I feel like there's so much I could contribute to the world if I could carve out an opportunity, but maybe I just need to learn to live within and accept these parameters?
I am working on some (much longer) writing on this, for the sequel to Unmasking Autism I'm currently drafting. There are limits to how helpful my perspective is, because I do have so much privilege in this respect, but I am interviewing lots of Autistics who are on disability benefits, who live with family, who live in vans or boats, and who otherwise stitch together a life that's meaningful and okay outside of the mainstream full-time capitalist structure. I think that is the best option for many of us...
Thanks so much for the reply! I agree with Morgan, that's super cool to hear. I'm actually living in Chicago as well, so it was super cool to find Unmasking Autism, and it was a revelatory experience for me that helped me take the suspicions I'd had for years more seriously and learn to start honoring myself for who I am a bit more. I sincerely appreciate the work you've been doing on a number of fronts!
This is great to hear! I'm a caravan-dwelling part-time working autistic. Full time work has felt impossible for some years now. Thank you so much for this article. And Milo, today hearing you on the discouragement factor. I started on low paid freelance sites (no particular education required) and worked my way up from there.
Seconding the freelancing, actually -- started on Elance (now Upwork) when I was in graduate school and had no credentials. I wrote SEO blog posts, helped review people's homework, edited self-published books...back then the site took a smaller % of payments, so it was a better option than it is today, but it is still possible to get at least some side hustles going from your home (or your bed, in my case). Sometimes you can convert clients on there to paying you directly so you don't get hit with the fees. It's not perfect, but it's an option for some.
Back in 2007 I realized life as a full time public accountant wasn't working for me when I dozed off at a stoplight on the way to work one morning. I also had developed intense pain in my shoulder and sometimes my thumb (which seems like an inconsequential joint until you try to hold a mug of coffee). I was lucky enough to land a part time bookkeeping work from home gig that paid enough to allow me to work about 10 hours a week while parenting 2 young children. I never even noticed at exactly what point the shoulder pain disappeared, but over a decade later it has never returned and I am convinced it was my body's way of expressing its state of overwork. I work about 15-20 hours a week now and as a new empty-nester I sometimes wonder if I should return to full-time work (I could easily do this at the same company I work for now). The mere thought of this exhausts me though, and when my hours creep over 25 (as they did when I covered for a coworker on maternity leave) I realize that it isn't a viable plan for the long term. My supervisors often comment that they are amazed at how much I manage to get done in the hours I work, and I think it has less to do with any innate speed on my part (I was ridiculously slow as a public accountant) and more to do with the fact that a well-rested brain is much more quick and agile.
I had major work burnout this year. At the same time learned my teen is NB and autistic. I’m more convinced than ever that I am autistic as well as my sibs, mom , etc. I see it as a positive. I’m late 40’s and have given up on career striving. Recently accepted a good enough job after a nightmarish foray into a management. Wish I could work part time but carry very good health insurance for myself, kids and ex. We’ve got to fix health care in this country.
Thank you for writing this! My "lost year" started in 2009. I'm still in it, and over the years, have resigned myself to the knowledge that I'm not going to get well. This is my life. I used to work 60-hour weeks habitually, and thought I had to. I didn't know there was this thing called "boundaries." I also didn't know I am Autistic. I only learned that a few years ago. The doctors never did figure out what's wrong. I am fairly sure I just plain burned out. When I look back, and reexamine my life from this new perspective of being Neuroqueer, and all the struggles I had, and how much I was masking without even knowing it, I can see how things couldn't have realistically ended any other way, but eventually crashing and burning. I wish I'd learned more about myself in time to prevent it. I didn't, but I hope other people, reading what you've written, will learn that there's another way to live before they've ruined their health forever, like I did.
THIS. Thisthisthisthisthisthisthis. Also your chinchilla is named fucking DUMP TRUCK? How are you my hero in so many ways.
I just started following you here on Substack (followed you on the bird app for several years, and Laziness Does Not Exist gave voice to everything my body has known for decades) Reading these comments tells me your hypothesis that 40 hours/week is a sickness is absolutely correct.
I was saying the same thing SO many years ago, and my friends and loved ones laughed at me and told me I was spoiled and lazy. (At the time I owned two part time businesses, worked full time, was trying to get back into making music, and was a passionate home chef - so *obviously* lazy)
Thank you for repeating this over and over: it is not us; it is this economic and social system that is sick.
My first lost year was in 2012 when I got pneumonia. I got better, but, I fell into another lost year in 2021 that's been drifting into the current time.
Thank you so much for sharing your experience. I don't feel so alone in not being able to physically work the hours that our society expects. And especially not feeling like I can both work and talk to people.
Ahhhh! My son and his partner were vending at MFF this year! I would be so amused if you two had encountered each other.
And also, I related to all of this so hard. I finally accepted my disabilities this year and stopped working in early June. I find just existing to be so tiring some days when I have more things to do than other days that I wonder how I ever managed to keep a "full time" job as long as I did, but then, I wasn't ever *actually* working full time at all and I had no energy outside of what hours I did work to do anything else. I have so many "lost years."
I'm in the process of trying to be approved for SSDI benefits now and I keep worrying some doctor will be like, "you seem fine to me," and 1) I'm *not* fine and 2) I'm *really, really not fine* when I'm forced to work.
Kudos on doing your own narration! I did corporate training voice-over work for years and can relate to how tiring and unnatural it feels.
Man I feel bad I can’t even read this because it just feels like hearing someone who won the lottery talk about how hard it was to work for a week which I know probably isn’t what was meant. There is zero path for me to live a life where I am not working bad jobs full time + or financially dependent on someone else who gets decision making then in my actions. I don’t even know how to get a job outside of retail at this point. I feel sick and miserable all the time and am getting to where I find having kids to be fucked up because you’re bringing them into the world to exploit others or be exploited. I cannot say with words the level of exhaustion and misery I feel on daily basis.
this this this. i finally found a comment i can relate to here
So interesting and well written. I wrote my master's dissertation on how neoliberal capitalism is a form of chronic illness and distorts our sense of time and space to force us out of society!
No doubt that work culture needs to change and we all need to be working fewer hours. However, it's easy for us chronically ill folks to project our sickness onto others and imagine full-time workers are suffering immensely even if they aren't. I constantly worry for my spouse because she has a full-time job. I ask her all the time if she's burnt out and have a hard time believing her when she says no. After many conversations about this I've had to accept that people have different energy levels, and just because I couldn't do her job doesn't mean it's abject torture for her.
If possible we'll try to save for an early retirement for her. But my inability to tolerate anything but part-time work due to my disabilities may mean that we can only afford a regular retirement. Just because full-time work would put me in the hospital doesn't mean it's that way for everyone at every company. My partner's line of work has a busy season and a really slow period that allows for recovery. And there's a fair bit of flexibility that allows for work-life balance.
For my mental health I've had to stop projecting my symptoms onto her because it was making me feel incredibly guilty about her being "forced" to work a full-time job. I've had to trust her when she says it's something she can handle and not an untenable situation. And if she burns out at some point, we'll try to adjust our lifestyle downwards, maybe by living in a van or trying tiny home living. I've offered that as an option to her now, but she'd rather work more and have a normal sized house. Just wanted to post this in case other disabled people feel this same guilt and can relate.
What you said about having to become the conniving rogue in order to secure your health really resonated to me. I have worked in the entertainment industry and food service industry for my whole adult life, and both will take everything you can give and more. I've had to become strategic about how I maintain boundaries with work, at times. Even in places that I set firm and explicit boundaries at the start, there's an inevitable upward creep in expectations. They take a little, I take a little. It's taken a lot of work unlearning shame (thanks for your writings on the subject, by thy way) to realize that it's not immoral of me to do so, especially when you stack it up to the moral offenses of employers. It seems clear to me that the ways I'm taking advantage of employers/systems will never equal out to what is being taken from me, but it at least gives me a little personal satisfaction and peace in a completely draining environment.
I really appreciate your outlook on so many things. I find your work relatable and easy to digest. It resonates with me on multiple levels. Thank you.