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Living with an "Episodic" Mental Health Condition
I have chronic endogenous unipolar depression. This is a technical medical term. Chronic means my depression is always there, as background noise in my life. Endogenous means there is no identifiable "reason" for my depression other than "my brain hates me and wants me to be miserable". Unipolar means I get major depressive downs, but I don't get manic highs.
I've had this condition for as long as I can remember. I suspect I was depressed as a child (and certainly there's some evidence pointing to this conclusion in my family's stories), although growing up with two depressed parents, at least one chronically depressed grandparent, and another three grandparents who had occasional depressive episodes, not to mention aunts and uncles who display depressive symptoms, it's hard to figure out how I would have learned not to be depressed, and from whom. I started getting occasional periods of suicidal ideation as young as age ten or eleven (this is the earliest I can remember wanting to kill myself. It's been a persistent thought).
As someone with an "episodic" disorder (to use the words of the McClure review, and of our social security minister) I feel it's probably worthwhile to explain what this means in practice. So here's how the episodic nature of depression affects me.
Approximately seven times a year, I'll have a really bad day. On these really bad days, I will not be capable of physical, emotional or mental labour. What a "bad day" looks like from the outside is me sitting in front of my computer, playing something like Solitaire, Bejewelled, or Chuzzles, and crying. Non-stop. For hours on end. What's happening on the inside of my head is I'm trapped in a cognitive loop - I'm either in an argument with the part of my mind which is telling me I'm useless and hopeless and all those other really negative things; or else I'm trapped in a vision of a future where nothing is going to get better, where I'll always be alone, always be broke, always be hurting, and always be completely without hope. I can't get out of the loop, and I can't break out of the overwhelming feelings of negativity and hopelessness which come with it - instead, I just have to endure them. On these days, the thought of killing myself is always there, and it's a very real temptation. To the point where on such days, I will deliberately make choices to avoid things such as cooking dinner (because that involves sharp knives) or going outside (because the temptation to find a busy road and be careless crossing it is far too great).
So, those are the really bad days, and like I said, there's about seven of those per year. Not such a bad bargain, right? Except those bad days don't come unaccompanied. For about two or three days prior to a really bad day, I'll be in a downward spiral, where my thoughts and moods become ever more negative, and where physical, mental and emotional labour become much more difficult. Where every silver lining comes with a cloud, and where looking on the bright side becomes impossible - and this affects mental labour products as well. For about two or three days after a really bad day, I'll be in what I term "clean-up" mode - emotionally numb, and physically and mentally exhausted as well, while I cope with the after-effects of the mental storm. So between the precursor days and the post-storm clean-up days, I basically can write off an entire week of productive work. Seven bad days a year, and seven weeks where I'm effectively not working at full strength, and that's the base level of my disorder.
Now, occasionally, I'll have days where the mental weather clears, where the stars align and where I'm suddenly able to work to my full capacity, rather than spending the days doing the psychological equivalent of slogging uphill through chest-high treacle. When those days hit, my full capacity is very, very good. Problem is, I maybe get about seven of those days per year as well, and they're never precisely predictable.
If I try to force things, try to stress myself into functioning at full capacity all the time, I can get away with it for a bit. But the cost is an increase in the number and frequency of bad days, and an increase in my susceptibility to those bad days. So for every one good day I can force out of myself, I basically commit myself to another bad day, and its accompanying week of poor productivity. Plus, the good days come out of my pool of resources for coping with everything - I'm essentially stealing from my future self.
I started working at age fifteen, combined with full-time study. I had my first breakdown at about age nineteen, although I didn't recognise it at the time, after four years of that sort of workload. The breakdowns happen when I run out of resources, and have to let something drop. To use the tumblr terminology, I lose all capacity to "can".
My next breakdown was at age twenty-six, then twenty-eight, then thirty, thirty-one. I went on psychological medication for a while - SSRI type antidepressants. They cut down the breakdowns to a degree, but they didn't stop the bad days. I started cutting back on working hours for a while between ages thirty-one and thirty-five, and I do credit this with slowing the rate of the breakdowns, because they came back with a vengeance when I started working full-time again. Thirty-six, thirty-seven, thirty-eight, and my most recent breakdown happened when I was forty, just after having worked six weeks full-time (plus 90 minutes each way commuting from one place to another).
I'm forty-three now. I'm rated as capable of performing about twenty-one hours a week of work by Centrelink, which feels like it might be accurate, or I might be over-estimating my capacity. I won't know until I try. What I do know is twenty-one hours a week is the capacity I can manage without breaking down. It doesn't rule out the bad days, and it doesn't rule out the bad weeks surrounding them, so there's still effectively seven weeks out of fifty-two where even twenty-one hours a week worth of work will be too much. This is the reality of an "episodic" disorder. Just to make things even more fun, those seven weeks a year have never been predictable to any large degree.
I can force myself to work through a bad week, and try to confine the worst of the storm to my off-work hours. But it means I'll still be hurting inside, and I'll be resorting to rough-and-ready coping methods in an effort to deal with it. Which means self-harm. I don't cut - I'm a wimp about that type of pain. Instead, I try to dislocate my fingers (and toes if I'm in a situation where I can reach them), or I hit my head against walls, books, binders - anything to try and externalise the mental pain I'm experiencing. It's distressing me to have to do this as a way of avoiding collapse, and it's disturbing for others to have to witness it. So there's another consideration for employers as well. I will be short-tempered, and while I'll do my best not to take out my poor mood on others, there will be times when the landmines in my psyche can't avoid being triggered.
The really distressing incidents to experience and witness are what I call meltdowns. These are where a "really bad day" appears out of nowhere, where I've triggered a landmine and the explosion catches me unaware. These are really distressing to experience, because they involve unstoppable crying, overwhelming emotion, and incredible levels of mental pain. They're distressing to witness for others, because what people see is me screaming, sobbing hysterically, beating my head against any hard surface I can find, and effectively falling to pieces. So far I've managed to confine most of these to home. But I have melted down in public on occasion (once, when I was fourteen). I may be able to articulate why I'm melting down. Often, however, I won't be able to articulate it in a fashion which makes any sense to anyone who isn't me. Doesn't mean the pain isn't real to me, but it does mean the pain isn't comprehensible to others.
So, living with this episodic disorder means I constantly have to have one eye on the mental "weather", so to speak. I have to be constantly monitoring my emotional, physical and mental resources (which takes resources in and of itself). I have to be constantly watching my behaviour - am I on the verge of a meltdown? Which means I really don't have one hundred percent of my capacity to give in any particular situation. Any kind of mental processing taken to excess (for example, being required to work in a noisy environment) can lead to what I call "overload" - a point where I have diminished coping capability, because I've effectively run through my day's allowance of cope. When I reach overload point, I become extremely short-tempered and irritable, and it is at this point I'll start being anti-social.
In a workplace environment where people are required to be working to capacity all the time, I'm consistently working below potential. It frustrates managers, it frustrates supervisors, heck, it frustrates me. But it's necessary, because otherwise I don't have the capacity to care for myself, and deal with my condition. I can fake normality for a while, but the faking steals capacity to deal from the future me - the more I have to perform, the less time I can perform for.
This is at least part of why I'm currently unemployed. Another large part of it is due to the effects of profound mental illness on my ability to study and to complete courses of study. I can get approximately one semester worth of study for one subject before my limits are reached these days. Anything additional means I'm failing classes or stressing myself to the point of breakdown. So of course, when I try to complete tertiary study (something I'm intellectually capable of, and intellectually well-suited to) the amount of emotional and physical work required to combine study with remaining part of society means I wind up either having to cut my course load down to the point where it's positively ridiculous, or where I have to drop subjects in order to be able to continue to study at all. So I don't have any qualifications, and I don't have any certification of the skills I do have. Which means employers don't have any realistic idea of what I can and can't do in the workplace.
Employing me, or someone like me, requires a workplace which allows me to vary my workload in order to cope with the changing mental weather. It requires a workplace where my boss is going to accept me saying "I'm having a bad week at the moment; can I please not be put in customer-facing situations unless it's absolutely necessary" without either complaining, attempting to force me into situations I've said I'm ill-equipped to handle, or attempting to guilt me into performing according to their plans. It requires a workplace where I'm allowed to say "I'm feeling overloaded, can I go home?" (and where there's an acceptance this point may well occur twenty minutes into the working day). It requires a workplace where I don't feel required to meet the performance standards set by persons who don't have my rather interesting set of obstacles to performing at capacity. It requires, in short, a workplace which Western Capitalist society is profoundly ill-equipped to supply.
I've had this condition for as long as I can remember. I suspect I was depressed as a child (and certainly there's some evidence pointing to this conclusion in my family's stories), although growing up with two depressed parents, at least one chronically depressed grandparent, and another three grandparents who had occasional depressive episodes, not to mention aunts and uncles who display depressive symptoms, it's hard to figure out how I would have learned not to be depressed, and from whom. I started getting occasional periods of suicidal ideation as young as age ten or eleven (this is the earliest I can remember wanting to kill myself. It's been a persistent thought).
As someone with an "episodic" disorder (to use the words of the McClure review, and of our social security minister) I feel it's probably worthwhile to explain what this means in practice. So here's how the episodic nature of depression affects me.
Approximately seven times a year, I'll have a really bad day. On these really bad days, I will not be capable of physical, emotional or mental labour. What a "bad day" looks like from the outside is me sitting in front of my computer, playing something like Solitaire, Bejewelled, or Chuzzles, and crying. Non-stop. For hours on end. What's happening on the inside of my head is I'm trapped in a cognitive loop - I'm either in an argument with the part of my mind which is telling me I'm useless and hopeless and all those other really negative things; or else I'm trapped in a vision of a future where nothing is going to get better, where I'll always be alone, always be broke, always be hurting, and always be completely without hope. I can't get out of the loop, and I can't break out of the overwhelming feelings of negativity and hopelessness which come with it - instead, I just have to endure them. On these days, the thought of killing myself is always there, and it's a very real temptation. To the point where on such days, I will deliberately make choices to avoid things such as cooking dinner (because that involves sharp knives) or going outside (because the temptation to find a busy road and be careless crossing it is far too great).
So, those are the really bad days, and like I said, there's about seven of those per year. Not such a bad bargain, right? Except those bad days don't come unaccompanied. For about two or three days prior to a really bad day, I'll be in a downward spiral, where my thoughts and moods become ever more negative, and where physical, mental and emotional labour become much more difficult. Where every silver lining comes with a cloud, and where looking on the bright side becomes impossible - and this affects mental labour products as well. For about two or three days after a really bad day, I'll be in what I term "clean-up" mode - emotionally numb, and physically and mentally exhausted as well, while I cope with the after-effects of the mental storm. So between the precursor days and the post-storm clean-up days, I basically can write off an entire week of productive work. Seven bad days a year, and seven weeks where I'm effectively not working at full strength, and that's the base level of my disorder.
Now, occasionally, I'll have days where the mental weather clears, where the stars align and where I'm suddenly able to work to my full capacity, rather than spending the days doing the psychological equivalent of slogging uphill through chest-high treacle. When those days hit, my full capacity is very, very good. Problem is, I maybe get about seven of those days per year as well, and they're never precisely predictable.
If I try to force things, try to stress myself into functioning at full capacity all the time, I can get away with it for a bit. But the cost is an increase in the number and frequency of bad days, and an increase in my susceptibility to those bad days. So for every one good day I can force out of myself, I basically commit myself to another bad day, and its accompanying week of poor productivity. Plus, the good days come out of my pool of resources for coping with everything - I'm essentially stealing from my future self.
I started working at age fifteen, combined with full-time study. I had my first breakdown at about age nineteen, although I didn't recognise it at the time, after four years of that sort of workload. The breakdowns happen when I run out of resources, and have to let something drop. To use the tumblr terminology, I lose all capacity to "can".
My next breakdown was at age twenty-six, then twenty-eight, then thirty, thirty-one. I went on psychological medication for a while - SSRI type antidepressants. They cut down the breakdowns to a degree, but they didn't stop the bad days. I started cutting back on working hours for a while between ages thirty-one and thirty-five, and I do credit this with slowing the rate of the breakdowns, because they came back with a vengeance when I started working full-time again. Thirty-six, thirty-seven, thirty-eight, and my most recent breakdown happened when I was forty, just after having worked six weeks full-time (plus 90 minutes each way commuting from one place to another).
I'm forty-three now. I'm rated as capable of performing about twenty-one hours a week of work by Centrelink, which feels like it might be accurate, or I might be over-estimating my capacity. I won't know until I try. What I do know is twenty-one hours a week is the capacity I can manage without breaking down. It doesn't rule out the bad days, and it doesn't rule out the bad weeks surrounding them, so there's still effectively seven weeks out of fifty-two where even twenty-one hours a week worth of work will be too much. This is the reality of an "episodic" disorder. Just to make things even more fun, those seven weeks a year have never been predictable to any large degree.
I can force myself to work through a bad week, and try to confine the worst of the storm to my off-work hours. But it means I'll still be hurting inside, and I'll be resorting to rough-and-ready coping methods in an effort to deal with it. Which means self-harm. I don't cut - I'm a wimp about that type of pain. Instead, I try to dislocate my fingers (and toes if I'm in a situation where I can reach them), or I hit my head against walls, books, binders - anything to try and externalise the mental pain I'm experiencing. It's distressing me to have to do this as a way of avoiding collapse, and it's disturbing for others to have to witness it. So there's another consideration for employers as well. I will be short-tempered, and while I'll do my best not to take out my poor mood on others, there will be times when the landmines in my psyche can't avoid being triggered.
The really distressing incidents to experience and witness are what I call meltdowns. These are where a "really bad day" appears out of nowhere, where I've triggered a landmine and the explosion catches me unaware. These are really distressing to experience, because they involve unstoppable crying, overwhelming emotion, and incredible levels of mental pain. They're distressing to witness for others, because what people see is me screaming, sobbing hysterically, beating my head against any hard surface I can find, and effectively falling to pieces. So far I've managed to confine most of these to home. But I have melted down in public on occasion (once, when I was fourteen). I may be able to articulate why I'm melting down. Often, however, I won't be able to articulate it in a fashion which makes any sense to anyone who isn't me. Doesn't mean the pain isn't real to me, but it does mean the pain isn't comprehensible to others.
So, living with this episodic disorder means I constantly have to have one eye on the mental "weather", so to speak. I have to be constantly monitoring my emotional, physical and mental resources (which takes resources in and of itself). I have to be constantly watching my behaviour - am I on the verge of a meltdown? Which means I really don't have one hundred percent of my capacity to give in any particular situation. Any kind of mental processing taken to excess (for example, being required to work in a noisy environment) can lead to what I call "overload" - a point where I have diminished coping capability, because I've effectively run through my day's allowance of cope. When I reach overload point, I become extremely short-tempered and irritable, and it is at this point I'll start being anti-social.
In a workplace environment where people are required to be working to capacity all the time, I'm consistently working below potential. It frustrates managers, it frustrates supervisors, heck, it frustrates me. But it's necessary, because otherwise I don't have the capacity to care for myself, and deal with my condition. I can fake normality for a while, but the faking steals capacity to deal from the future me - the more I have to perform, the less time I can perform for.
This is at least part of why I'm currently unemployed. Another large part of it is due to the effects of profound mental illness on my ability to study and to complete courses of study. I can get approximately one semester worth of study for one subject before my limits are reached these days. Anything additional means I'm failing classes or stressing myself to the point of breakdown. So of course, when I try to complete tertiary study (something I'm intellectually capable of, and intellectually well-suited to) the amount of emotional and physical work required to combine study with remaining part of society means I wind up either having to cut my course load down to the point where it's positively ridiculous, or where I have to drop subjects in order to be able to continue to study at all. So I don't have any qualifications, and I don't have any certification of the skills I do have. Which means employers don't have any realistic idea of what I can and can't do in the workplace.
Employing me, or someone like me, requires a workplace which allows me to vary my workload in order to cope with the changing mental weather. It requires a workplace where my boss is going to accept me saying "I'm having a bad week at the moment; can I please not be put in customer-facing situations unless it's absolutely necessary" without either complaining, attempting to force me into situations I've said I'm ill-equipped to handle, or attempting to guilt me into performing according to their plans. It requires a workplace where I'm allowed to say "I'm feeling overloaded, can I go home?" (and where there's an acceptance this point may well occur twenty minutes into the working day). It requires a workplace where I don't feel required to meet the performance standards set by persons who don't have my rather interesting set of obstacles to performing at capacity. It requires, in short, a workplace which Western Capitalist society is profoundly ill-equipped to supply.
no subject
(Anonymous) 2014-07-01 05:49 am (UTC)(link)Came across your post from your link on the conversation. Wanted to let you know I relate. I have Bipolar Disorder - the very definition of an "episodic illness", I guess. I was having trouble putting into words just how devastating the whole episode is when it comes along - not just for the actual mood part of it, but the before and after effects. You described it perfectly. Keeping an eye on that mental weather takes up a hell of a lot of time within itself, right? And on those days when everything is going downhill even the sunlight is too offensive to process, never mind a workplace with other people who you have to be nice to, customers to speak to, phones to answer. It's hard enough to brush your teeth and eat on those days. I guess with me, on the upside, is that with a manic episode I could make up for those months of lost productivity. Hopefully my employer can deal with the months I can't show up to work before that, or the embarrassing situations that are sure to ensue when I get a little bit psychotically manic.
As you said, western capitalism is ill equipped to support anybody that does not provide a well oiled cog in the cost benefit machine and it is not for us. Not for a lack of trying, though.
I hope you are looking after yourself and that somebody gives this government an empathy implant so we can all get on with trying to find a way to live life in the best way possible with these "episodic" illnesses.
via theconversation
(Anonymous) 2014-07-02 10:58 am (UTC)(link)The Conversation
Thank you so much for posting this explanation of just what "work" and "episodic mental illness" is and how the two just don't compute - I'd almost wish the curse of "episodic" mental illness on Kevin Andrews - just so he'd know what the hell he was jabbering on about - except not even I am cruel enough to wish a mental illness on anyone, even someone as patently sociopathic as Kevin Andrews (!) You illustrate beautifully just why people with a mental illness such as yourself and myself just aren't suited to the 9-5, Mon-Fri, 40 hour week that is expected in today's workplace. If I didn't have a mental illness I would be having enough trouble getting work - but just try telling a potential employee you have one - you'll be out the door in no time!
The last 2 jobs I had were back in 2007/2008 and both I basically left before they were about to kick me out anyway. I've got bipolar, but this is exacerbated by having PTSD (which simply was to add insult to injury or is that injury to insult?). So if you have a mental illness and want work - you not only need to be as good as the best other candidate - you have to better than them, way better. Because given the choice of hiring "Miss A" with disability vs. "Miss B" without disability they'll choose Miss B every time. And even though I've always lied in job interviews about there being anything wrong with my health, increasingly over the years it has backfired on me as they quickly find out that I'm a little bit.. quirky... different. Unstable.
Thanks for having the guts to come out and say it as it is in a public forum. As it is I'm simply to scared to speak about this openly.
How is this for irony? When the report came out from Kevin Andrews that he wanted to see people on disability pension with mental illness onto Newstart and "back into work" I was having a major, shall we say "episode" and was in a psychiatric hospital. One of the patients that I made friends with there and bonded over talking about politics with - he actually went to SCHOOL with Kevin Andrews. And yes, he was just the kind of snitching unpopular teacher's pet you would expect. What a surprise.
Anyway, I'm loving reading your "blog" (or whatever you might call this thing) and will devote myself to reading it further. You have a new devoted reader in me :)
In the meantime, I'm just hoping (while intermittently hyperventilating into paper bags and trying all my best self soothing attempts to avoid panic attacks) hoping that the more revolting and punishing parts of this budget do not get passed the Senate and these horrible men are tossed out at the next election. Despite my previous involvement in lots of radical activism, it feels like all that we can do is hope and wait and pray (despite being an atheist and all that) that the Australian public see's reason, that the PUP senators realise populism against the budget plays well and this regressive punitive budget doesn't get passed.
All the best,
The_Pirate_Blues (that's been my handle since the coalition got elected anyway)
P.S. I spent approximately half my life (when I add the time periods up) living in Perth myself. I'm located in Melbourne now - as a progressive and political person - I just love this city!