When Severe Mental Illness Keeps You from Working

Thursday, January 6 2011 Holly Gray

An invisible disability is one you can't see with the naked eye. Read about what it's like when severe mental illness is disabling. Dissociative Living blog.

The man typed some figures and stared at the computer screen, eventually muttering, "You qualify for $440 a month in assistance. Your rent is $740. Don't know how you're going to do it." I stared at a rip in an orange, Naugahyde chair. I didn't know how I was going to do it either. It was the year I discovered what it's like to live on welfare (How to Get Disability Benefits for Mental Illness). I learned valuable lessons about poverty that I won't soon forget. And I came face-to-face with the realities of severe mental illness and invisible disability.

Mental Illness Can Incapacitate You, Making Working Impossible

I was 16 when I got my first job. I worked at a fast food restaurant and was proud to earn my own money. I continued working here and there throughout high school and college. Later, I got a job in print advertising and thought I'd found my niche. But when I was 29, the opaque dissociative walls that had allowed me to function relatively successfully lost some of their density and the consequences were staggering.

I was diagnosed with dissociative identity disorder, which explained things, but further diminished my capacity to function by exacerbating my dissociative symptoms. I couldn't work and, to most outside observers, there was no discernible reason why - DID is an invisible disability. A psychiatrist advised me to apply for social security disability. I took his advice, but the blow to my pride and self-esteem was humbling. I felt humiliated and like an utter failure.

Managing Mental Illness Is a Job in Itself

It took me a long time to learn that navigating life with a severe mental illness is not just about symptom management, therapy, and medication. Mental illness permeates every aspect of life. No arena - work, family, physical health, etc. - goes untouched. Dissociative identity disorder allows for extreme compartmentalization. And while that solves some problems, it causes others:

  • You know you have an important meeting at 3pm on Thursday. You know it's Thursday. But those two pieces of information exist on different frequencies. Did you attend that meeting? No, you were busy color coding your calendar so nothing slips through the cracks. You're surprised when you realize you missed the meeting.
  • The personality state that's best at interacting with people spends 40 hours a week out, engaging with external people. The pressure to maintain continuity - not to mention the appearance of normalcy - is enormous. When the veneer cracks, as it always eventually does, you wake up one morning crippled with anxiety about going to work and facing all those people you don't know how to talk to.

When Severe Mental Illness Keeps You from Working, It Hurts

If you have dissociative identity disorder, you can probably name a hundred other ways DID impacts your ability to work. It's not always completely disabling, but there's no doubt that DID affects you in ways others can't see, let alone understand. And I don't know about you, but I often can't see it either. I forget that I have an invisible disability and I'm disappointed (to put it mildly) every time I once again realize the stringent limits my severe mental illness places on me.

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Author: Holly Gray

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When Severe Mental Illness Keeps You from Working

Stephanie
says:
January, 6 2011 at 2:44 pm

YES. The more "head of the household" I become, the more I start to second-guess my ability at functioning the way I always have. One of my "alters" was the main one who went to work and interacted with people. I have had to essentially re-meet all of my coworkers over the past year or so. That in and of itself is exhausting. Let alone the 30-hour weeks, symptom management, and everything else. Some weeks I don't know how much longer I can do it.

I'm still not sure how much longer I can continue working. I try my best, and that's helped by the fact that I love my job, but I come home at the end of the day and am totally wiped out. This post was so VALIDATING because it's so hard to get the feedback that YES, what I'm doing is monumentally HARD and near impossible. The only reason I was able to do it before was because I had dissociation as an automatic defense mechanism. Now I'm trying to learn to stay at that level of functioning without the dissociation and it's taking a horrible toll on my mind and body.

So thanks for the validation. <3

In reply to by Anonymous (not verified)

Holly Gray
says:
January, 9 2011 at 7:48 pm

Hi Stephanie,

" ... YES, what I’m doing is monumentally HARD and near impossible. The only reason I was able to do it before was because I had dissociation as an automatic defense mechanism. Now I’m trying to learn to stay at that level of functioning without the dissociation and it’s taking a horrible toll on my mind and body."

Oh yes, what you're doing is monumentally hard. And that last sentence so beautifully articulates the anger I have about my limitations. I am working to be less dissociative, more aware ... and this is the price I pay? That I can't work without sacrificing my mental health, let alone the rest of my life? It might not be very adult of me, but that makes me angry.

I appreciate your comment. It was really validating for ME. Thank you so much.

Dana
says:
January, 6 2011 at 10:19 pm

Holly- Once again I thank you for writing something I needed to hear. Right now I sit looking at my Facebook, tearing up as I see 2 of my closest elementary school friends heading out to law school. I know they do not know anything about where I am in life. Honestly I haven't spoken to either of them since we left middle school. I glance up at the space for a school in my own profile and the blank space feels blinding. I was top of my graduating class.
When I couldn't take college anymore I opted for trade school and worked my way up taking classes here and there in the nursing field. Once again focused on the perfection that I desperately require of myself. I made it right up to where I need to take my LVN courses. I remember the day my life crumbled around me. My coworker picking me up off the floor and carrying me home. That was my last day on the job, and the last day I feel I was a functional member of society.
I could go into what happened but the reality is it didn't matter. I couldn't remember who I was, where I was or who the man carrying me out of the building was. I was floating near the ceiling knowing that the crying body this man was carrying couldn't be me yet there I was attached to it and forced to follow.

Looking at this post it reminds me that not only was that the last day I functioned at the capacity that I did but it was also the first day of my healing. The day that those dissociative barriers began to become a bit more opaque. The day my life changed forever... the day I became real.

Dana

In reply to by Anonymous (not verified)

Holly Gray
says:
January, 9 2011 at 7:51 pm

Hi Dana,

I really relate to your sadness and grief as you read about classmates who are successfully venturing out into the working world. I feel that too. Today I am angry. I'm angry that I can't be a productive member of society without further compromising my mental health. I feel I have a lot to offer, and I'm mad that doing so would exact an exorbitant cost from me.

Zara
says:
January, 7 2011 at 5:26 am

What many people don't understand is that although you may be looking at a 40 year old, you may very well be talking or arguing with 12 year old.

When you think about written word, a teenager can write with such depth and understand but with the lack of emotional maturity to understand the implications of their words. You forgive the teenager b.c you figure in time they will learn.

If a 40 year old were to write the very same piece, you tear them to shreds, saying that they know better and should be ashamed of themselves. When are you sure who wrote what? and for someone who is emotionally stunted, 40, 50, 12; all the same age. Mental illness affects the whole person, I wish people would remember that!
Anya

In reply to by Anonymous (not verified)

Holly Gray
says:
January, 9 2011 at 7:57 pm

Hi Anya,

Thank you for commenting. You make a really important point. This is one of the realities of living with Dissociative Identity Disorder and it's part of why systems are re-traumatized so easily. But you're right, it applies to other mental illnesses as well. I don't expect special treatment, but I don't think a little grace is too much to ask. And life has surprised me ... there really are people who will offer that grace and empathy. Still, I'm saddened, disappointed, and even angry at how mental illness limits me.

Thanks for reading, Anya.

Theresa
says:
January, 7 2011 at 5:36 am

I wish I could get disability. I can't work b/cof my mental illness but I stayed home with my kids for to long before someone told me I could get disability, now I don't have enough work credits but I can't work either. and dh's pay has been cut to far to survive without me having some income!

In reply to by Anonymous (not verified)

Holly Gray
says:
January, 9 2011 at 7:59 pm

Hi Theresa,

Oh that's a tough spot to be in, you have my empathy. I am very fortunate in my circumstances. I am still on disability today. If I had to live just on that I'd be in poverty - which is precisely how so many with mental illness live. It doesn't seem right to me.

Paul
says:
January, 7 2011 at 12:59 pm

I have been lucky I must say. Because I have a job that allows me to be really flexible. So, when I can't work i don't. And when I can I do. It wasn't always this way. When I first started working (same job), I was super functional. As I've healed, I know I have to give more time to paying attention on the inside. I realized that my being super functional often led to utter collapses when the "job was done". I learned that i didn't have to do that. Or I learned that it wasn't good for me. This new approach I often label as my being a failure. But most of the time I can challenge that view and call it what it is: accepting I have limitations.

By the way, the title of your blog post, saying "severe mental illness", is something I've never attributed to myself and my DID. For some reason reading those words hit me hard. I've not thought of my challenges as severe mental illness before. But, I think you are definitely right Holly. Thanks!

In reply to by Anonymous (not verified)

Holly Gray
says:
January, 9 2011 at 8:05 pm

Hi Paul,

I'm lucky too. And it bothers me that good fortune plays such a leading role. I have options that so many people don't. I have the opportunities to try things out and make adjustments and eventually learn to create balance. But not everyone can do that. They either work 40 hours a week or their children don't eat. That bothers me a great deal.

For me, I don't see any way around the fact that DID is a severe mental illness. It profoundly impacts my ability to work to such a degree that I have to choose between being a productive member of society, and being relatively stable and well. That's severe. It hurts to know that, though. It's hard.

In reply to by Anonymous (not verified)

Holly Gray
says:
January, 9 2011 at 8:06 pm

Oh Paul - and what you said about your new approach you label as being a failure? I absolutely get that. I feel like a failure too.

Angela
says:
January, 7 2011 at 1:43 pm

Before I had children (who suck up any and all time off you get, as you are surely aware), most of my time off was wasted on "sick" days. Days when I just couldn't get out of bed for one reason or another. Whatever excuse I used, the truth never changed--I simply could not bring myself to leave the house. Because everyone out there KNEW. That I was a looney, that I was incompetent, that I was a failure. I'd return to work a day (or 5) later, sure I was going to be fired--but I wasn't. And that almost made me feel worse.

It's so hard to try to explain to someone who hasn't experienced it. They see no reason why one can't just suck it up and go to work or school or whatever. Sometimes it just isn't possible.

carla
says:
January, 7 2011 at 6:45 pm

Sure, I can work. Until something or someone triggers me and I end up having a flashback in front of my co-workers. Then I have to dissociate the whole incident away just to be able to walk through the doors and clock in without really letting it sink in that all those frightened and disturbingly fascinated looks are aimed at me. Not to mention the pity glances. Putting yourself through this can turn into a vicious, unhealthy cycle. I'm done doing that to myself for a while.

carla
says:
January, 7 2011 at 7:02 pm

Oh, I forgot the" giggles behind the hand covered mouth" reaction. This one is my personal favorite. I love being ridiculed by the truly unenlightened. Good times.

castorgirl
says:
January, 8 2011 at 12:02 pm

Sorry, I know this is the place that I'm in at the moment... But all I can see is that I work full-time, so I can't be all that ill.

I see the stigma and problems people experience when they go on welfare due to mental health problems. It's wrong, but it exists. There have been television interviews with managers of our welfare organisations, saying that this girl who had been shot and bullied needed to "get herself off the couch". My workmates regularly make jokes about the mental health clients that do some of the courses where I work.

It's impossible to show weakness, and I know that hinders my healing. Maybe means I will never heal.

Elka
says:
January, 10 2011 at 1:27 pm

I really appreciate the discussion here. I'm well at the moment, and have been mostly together for the last year and have achieved a few important things that seemed impossible a few years ago like becoming qualified to be a teacher. Now I'm looking for a job and the fear of my own mind is kicking in hardcore.

Perhaps because I work with kids (so I feel a lot of responsibility to be reliable and available to them), perhaps just because it is huge to step into an environment without supports and try to function like a normal person, but I feel that taking on work is hugely risky. I worry about the effects of stress. I worry about not having someone close by who can tell (and tell me) when I am starting to trip. I wish it was possible to explain my condition to my employer, the same way one might describe diabetes, and put in place some saftey nets. Even if I never used them (like I said, I am coping well at the mo) I would feel much more comfortable, and therefore be less likely to have disruptive symptoms anyway. As it is, I have to take full responsibility for the risks because I have to keep it to myself.

I love my work, I am good at it and very dedicated. I want to contribute to the world and help kids learn. But it is terrifying at the same time.

I would love to hear about any strategies people have come up that make them less vulnerable, more secure, and more able to function at work... perhaps strategies that help you parent well with DID would also be relevant in my case...

In reply to by Anonymous (not verified)

Christina
says:
August, 5 2017 at 9:13 am

Hi Elka,

I do see that you posted this comment over six years ago, but I have a hunch my response may help someone out there who might be in a situation similar to yours, even if it never reaches you personally.

Kids can be incredibly accepting. In an office environment, one is in contact with other adults who are there as professionals. But in a classroom, your "office mates" are your students. I'm wondering if it might be worth it to explain your situation (in age-appropriate terms) to them, and ask for them to speak up if something seems to be off with you. This way, you can get the support you need (both a sense of acceptance and a way to manage your symptoms), while also encouraging your students to perceive and interact with people who have a mental illness in positive and appropriate ways. Plus, they'll feel helpful and be more motivated to respond to your directions - whether academic or behavioral.

You may want to incorporate a keyword to minimize the potential for getting off-track with your curriculum (ie. if someone calls out the keyword during lecture, you'll know that they're observing something that you need to address, without them explaining everything right then and there - which can be disruptive if you're in the middle of explaining an important point). Once you reach a stopping point with your lecture, you can ask for more detail about what they observed. This would not be to embarrass you - it would be to open up communication about mental illness, whether it's as it pertains to you or in general. One of your students could have their own diagnosis. By opening up about yours, you encourage them by example to open up about theirs. (Shoo, stigma!!)

If I were in your shoes and I decided to explain things to my students and ask them to notify me if they observe any symptoms, I'd get my supervisor in the loop, so that he or she can support me if things go awry in some unforeseen way. Kids can be accepting, like I said, but there's often one or two who aren't so much - and depending on the student's age, you may find that they don't always have the filters that adults tend to have (ie. kids can be blunt). In the event that a student or students gives you backlash, you might decide to pull them aside outside of class and/or bring your supervisor in to help.

But if they push back during class? You might be surprised by other students' responses. They could well shut down the "bully's" behavior before you can say, "Go to the principal's office." It's not a perfect world; the other students may not come to your aid if the offending student scares them or has threatened them in some way that you are not aware of. In that case, definitely bring in a supervisor, since the issue at hand could extend well beyond you and your mental illness. Still, being open with the class as a whole can promote them bonding with each other and you, and can do wonders for their perception of mental illness as a challenge that is worth acknowledging, talking about and working with, rather than a thing to be feared, silenced, ignored or demonized.

I want to emphasize that I am making suggestions here, and am not intending to tell anyone what they should do. It's easy to slip into advice-giving, so I apologize if anything I wrote sounds like a requirement, rather than a suggestion.

Thank for the post, Elka! I'm loving the discussion here, too, though I wish I'd found it a few years earlier, lol. ;-)

Mareeya
says:
January, 16 2011 at 5:57 am

"Hi Stephanie,

” … YES, what I’m doing is monumentally HARD and near impossible. The only reason I was able to do it before was because I had dissociation as an automatic defense mechanism. Now I’m trying to learn to stay at that level of functioning without the dissociation and it’s taking a horrible toll on my mind and body.”

Oh yes, what you’re doing is monumentally hard. And that last sentence so beautifully articulates the anger I have about my limitations. I am working to be less dissociative, more aware … and this is the price I pay? That I can’t work without sacrificing my mental health, let alone the rest of my life? It might not be very adult of me, but that makes me angry.

I appreciate your comment. It was really validating for ME. Thank you so much."

I just wanted to say that this is validating for me as well. I have trouble putting my thoughts into words sometimes, so I need to borrow from the above comment, because I relate to every bit of it.

I simply cannot function at work without my dissociation. I just can't, and it is not only frustrating, but scary as well. It feels as though I, as myself, do not know a thing about my jobs or my co-workers. I've had some days at work where it seemed as though the parts of my system who normally do my work for me just up and took a vacation. I ended up in my therapist's office in a total panic begging her to not let me lose those parts. At the time I feared, and I think my parts feared that my therapist was there to get rid of them. After my therapist assured me that she had no intention to "get rid of" any part of me, things at work improved again. I still have some days where it seems like those parts of me are gone, and I have to "wing it" at work, but it helped to know that my therapist just wants some communication between my parts, not to get rid of my parts.

Glen
says:
January, 23 2011 at 8:13 am

I've recently had to leave work and am so conflicted internally. In addition to managing my DID and getting the therapy I need, I was recently diagnosed as a type-II diabetic and that threw my whole system into turmoil.

Both my psychologist and my Dr. think it's good for me to be off to deal with this, and it does give me the time.

Financially it's a strain. Luckily I have DI (disability insurance) but there's a 3 month waiting period. And like many of you I have no available sick leave, so 3 months with no income is tough.

The conversation inside about all this is pretty messed up. Hopefully once everything is in place, and my insurance kicks in, things will get better. But in the meantime, I think only other people that have this disorder can understand.

Thanks for the post holly,

In reply to by Anonymous (not verified)

Holly Gray
says:
January, 24 2011 at 3:56 pm

Hi Glen,

Thanks for commenting.

I'm not surprised your system is struggling - this would be a lot to process even without DID to complicate things. I understand why your doctors say it's a good idea to be off of work but I also understand the conflict it's causing to do so. There are so many threads tied to work, income, wellness, physical and mental health - both practical (like bills) and emotional (like self-esteem).

"Hopefully once everything is in place, and my insurance kicks in, things will get better."

I will tell you, for whatever it's worth, that it did eventually get better for me. The chaos and conflict calmed down and in hindsight, I think having plenty of rest (i.e. not working) was part of what enabled that. So hopefully the very thing that's causing you stress and grief right now - not working - will also be part of what eases that stress and grief. It's probably hard to imagine right now. Hang in there.

Luna
says:
October, 31 2011 at 11:55 am

We don't concider ourselves DID, but we are definitely multiple. I'm not exactly sure where the differences and similarities are, but I do remember that "appearance of normalcy" and how hard it is to maintain.... but we found a solution, at least for us. Maybe it'll help somebody here.
We threw away that apparance. Yes, it was hard, it was stressful, we just threw it away. I was at work today, I was front. My client asked me my name. I didn't say "body name", I didn't say "Mia" or "Rebecca" (our other workers), no... I said "I'm Luna!". That is MY name. We're up front with it! "...but wasn't your name Rebecca yesterday?" some might ask, and I'll tell them "No, I'm Luna. Rebecca is one of my headmates".
Yeah, terrifying. However, we were about to be fired anyway from failing miserably at that veneer you talk about. It was always "Why did you lie?!" from the boss when one of us REALLY thought we got it right. So, we took the risk. The result? Our life is a BILLIION times better. Turns out, most people don't care. They want their computer fixed and they don't give a flying **** which "alter" (we HATE that word!) fixes it as long as it's fixed ASAP!!
In fact, a few of our regulars greet us by name! We arrive on site and get a name badge matching who's front!
We don't get "Why did you lie?!" anymore. We just say "Hold on, I'll get her. She knows" and whomever it was who knew just answers the questions.

We have a blog about our life as a publicly open multiple. Check the link http://publiclyplural.blogspot.com/

Like I said, we don't consider ourselves DID. I don't know if this will work differently for a DID system. So PLEASE, consider all the risks and benefits before following any example you might see us as. We can't be responsible if your millage varies!

-Luna

Brian Molzahn
says:
June, 7 2014 at 4:12 am

I'm just coming to terms that this condition is not something I can control and it frightens me that I will do something even worse than I've already done in order to hide it. I have never asked for any assistance and have always thought it it as a cop out but if I continue on the path I'm on without sucking it up and going on disability I'm afraid I will lose everything . Any information or comments on how to proceed with any assistance or disability would be greatly appreciated .

Candy
says:
August, 23 2014 at 2:23 pm

I usually work jobs but find that with lack of sleep my bones start to ache and my chest hurts and then I can't maintain the job, also no one can concentrate on no sleep.

KT
says:
August, 11 2017 at 2:30 am

Does anybody with DID work? And how did you make it work? I consider myself recovered but i definitely find life very difficult. Any stress, lack of sleep or unhealthy eating and I tend to become really ill again. I thought I was cured, everyone warned me that it doesn't just go away. I got all excited thinking I can finally start a career, cos that's what I want. To be successful and have a well paid job in a field I'm proud of. But the past year has shown that I may be incapable of it. Silly things like my car breaking down and not having money to cover it and my anxiety which makes me unable to walk down the road like a normal person has left me lying in bed for days on end feeling like my mind is tearing apart. It's clear that I may not be ready to work but the thought of not being able to is actually making me feel suicidal. I mean, what's the point in life if you can't live? I'd really appreciate some idea advice. I'm mad that I can't cure my anxiety, I've tried everything. Even integration therapy worked so god knows why I can't cure something small like anxiety

Syd
says:
May, 2 2018 at 12:16 pm

I've not been diagnosed with DID, but in reading all your comments the familiarity and mental peace of mind is there. Some days I' Am who my Legal ID (proof of identity) is. Others I'm Syd...all depends. It worries me at times, the identities that get defined in my head.... Mental breakdown unable to go to work and the tone of my manager made me literally want to quit on the spot. Currently waiting for intake to be seen by a Dr... At times I just feel like I'm unable to make a job work for me.

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