Mental Illness and Relativity

As I mentioned a few posts ago, at the beginning of December I started a new medication, and it worked. It worked better than I dreamed it would, and it’s continued to work. I still have bad days, usually when the weather is icky. I’m not sure science will ever unlock the mystery of the relationship between weather and health; I’m not sure scientists give it as much credit as it deserves. However, my good days increasingly outnumber the bad ones.

This is new and strange. Perhaps the strangest thing is how much time I suddenly seem to have.

Mental illness is a time sink. I could fall into social media or casual games for hours and hours on end, and then when I lifted my head to see the sun setting wonder what happened to the day. I’d remember when I was younger, even as recently as ten years ago, accomplishing so much in a day. Getting up and not taking hours to move beyond drinking coffee and checking my notifications. Putting on clothes and going downtown, going for a walk, working in the garden, doing the daily maintenance on my home, cooking elaborate meals. Depression and anxiety, the two main manifestations of my mental illness, have limited me by limiting my time. Dragging myself out of the Internet and putting down my phone has often seemed a Sisyphean task, the effort only gaining me minutes of clear space before those twin rocks forced me back on line.

I have had a love/hate relationship with those rocks. They are smooth, presenting no challenges other than their existence. They have kept me safe from interacting with things I’m not ready to face. I think many mental illnesses still exist, evolutionarily speaking, because they DO keep people safe and keep the broken parts from grinding together; it’s just when they take over and become chronic illnesses rather than temporary traits that they become more problematic. On the other hand, I sometimes (frequently) have remembered times of being more functional and wondered, “Is this it? Is this as good as it gets? Is this my life now?” Living with an uncontrolled mental illness is brutal and unforgiving; there’s always a reason why it’s your own fault. There are always other people, more functional and successful people, with whom to compare yourself, so the things lacking in your life stand out in sharp contrast. It’s easy to forget that every day you survive is a victory.

With my mental illnesses in relative check, I have so much more time. The time starts right away, first thing in the morning. I sleep better. I don’t have to take a sedative every night just to find my way to dreams. I go to bed and get up at times more “normal” for me. I need less sleep, too–still a solid eight hours, but not nine or ten or more. I can even function for a day on six or so, as I did last week when I had jury duty, which is another task that would have been impossible for me even to face before. It doesn’t take me two hours to get up off the couch and wash my face. Where I used to see the sun set and wonder what had happened to the day, now I’m functioning before noon most days. It still instills me with a sense of wonder, but now I’m wondering what to do with all this time, rather than wondering where it all went. In the past little while, I’ve crocheted a hat for a friend, started work on a sweater for the same friend’s tortoise (so they can match), cooked more, cleaned more, picked up yoga again (until I injured my ankle, at least), even gotten a start on a couple writing projects. The last two have remained difficult, as are any dedicated creative endeavors; contacting my heart causes me pain that brings everything to a screeching halt. Last night I even went with my husband to an open mic he wanted to play at. I looked forward to it all day. I put on makeup! And I had a reasonable time, experiencing some feelings of annoyance and alienation, but not nearly the feelings I would have just a short time ago, when I’d have been ready to leave an event five minutes after walking in the door–if I went in the first place.

All these things may seem small to a person who hasn’t struggled as I’ve struggled the past 10+ years, but to me they’re huge. And people (my therapist, my med manager) have told me in the past that losing time was an aspect of my illness, but I really didn’t get it until now, when that time is spread gloriously before me. Depression sapped my will and my motivation to do anything at all. I couldn’t even see how dirty my house got until six months had passed since the last time I’d mopped the floor and I made myself do it because I simply couldn’t stand it anymore. Everything became a matter of “which is worse: doing or not doing? How much can I stand?” Anxiety crippled me with a sense of dread at the prospect of engaging with life on any level at all. Much better to fend it off with games, with chit-chat, with Netflix, with anything I could use to numb the fear.

I don’t fool myself that all this is gone now. As I said, I still have bad days, and those days are BAD. Perhaps the worst thing about them is slipping back into self blame and recrimination, all the unproductive ways of thinking that, though I’ve worked forty years to loosen their grip, still take hold of me at those times. That I’m irredeemably bad and awful, that I have no value, that I’m weak and lazy and all the rest. That life is grey and dreary and will continue to be so until the day I mercifully die. Those days, I simply have to grit my teeth and bear it, try not to listen to the messages, and do what I need to do to get through. I have no illusions that I could survive in a capitalist institution like a “normal” job, or that routine “work” wouldn’t send me back into the spiral of suicidal ideation. A warning sign is that even saying those things sounds to me like making excuses for laziness, and right now my brain is berating me for wanting “special treatment” and “wanting to be taken care of instead of carrying my own weight.” Those are the signs of my sickness, and I think I may never be altogether free of them.

But right now, there is time. In the words of T. S. Eliot, “Time for you and time for me; time yet for a hundred indecisions, and for a hundred visions and revisions before the taking of toast and tea.”* And those indecisions, visions, and revisions, don’t scare me to death. And that’s good.

I believe this is how Einstein explained relativity: “A minute looking at a pretty girl goes my in the blink of an eye, but a minute sitting on a hot stove lasts a lifetime.” For me, a day consumed by anxiety and depression passes in an instant, and a day without their weight expands with infinite possibility.

I much prefer the latter.

*From “The Love Song of J. Alfred Prufrock,” 1917

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Passion

At my annual physical the other day I spoke with my new doctor about wanting (always understanding that for me, “wanting” anything is a theoretical construct) to be less sedentary. “I used to be really active, but I got depressed,” I told her, keeping a long, complicated story as short as I could.

“Well,” she asked, “when you were active, what did you like to do?”

“Nothing.” I said. “That’s the problem.”

How can you want something if you don’t like anything? Without wanting, how can you accomplish anything? Some philosophies promote focus on the Journey rather than the Goal, but the Journey doesn’t bring me any joy, and it never has. Well, perhaps on occasion, and mostly long ago. To be honest, the Goal has rarely brought me joy, either. Sometimes it’s garnered fleeting praise, but all too often the work of achieving it has outweighed the momentary high before the inevitable let down.

Writing the above paragraphs, it occurred to me I don’t know how to have fun. This isn’t a new thought. I didn’t have much fun as a child, and I never learned later. Most of my play was solitary. The few other kids on my block trickled away as their families moved. I lived too far from my school friends to spend any non-structured leisure time with them. When my siblings were home, they had little to no interest in playing with someone so much younger. At school, at the camp my mom sent me to for a few awful summers to get me out of her hair, the activities I enjoyed were the ones other kids mocked, not the “cool” ones. My parents interacted with me as little as possible, and didn’t encourage my interests, especially the ones that came at a financial cost. Their grudging support required I prove beforehand it would be worth their investment, and if I didn’t live up to their expectations their support vanished. Want to try gymnastics? Only if your PE teacher says you have talent (I didn’t). Music lessons? Can’t justify that if you won’t practice. It didn’t occur to me until much later that most children of six aren’t developmentally equipped to spend an hour a day at an instrument without adult support and encouragement.

In a few weeks I will turn 54 and I am still impossibly bitter about all this.

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A friend shared the above meme on Facebook today, with the comment that they often forget the truth of it. I replied I don’t forget; I just don’t know how. I was in my late twenties before someone told me it was okay to make mistakes, that I didn’t have to be good at stuff. It was a revelation, and I thought I had it. But early experiences sink deep, especially when events later in life affirm them again and again.

I can’t honestly say I’ve never had fun. Those times are hard to remember, though. My teenage friends were a serious bunch. Fun was an overrated and limited commodity, it seems to me now. My adult life has been full of struggle. Plans to do fun things fall by the wayside, done in by lack of resource, lack of energy. The things other people find fun drain me more than not, or else I find them inaccessible. When I was much younger, sometimes I’d dress up and go to a club. It did nothing for me; after a solitary drink, I’d go home wondering why I’d bothered and why everyone else there seemed to be enjoying themselves. Festivals and dance gatherings strike me the same way, as do parties. I used to enjoy camping and hiking, I think. Now they seem more trouble than they’re worth. Whatever I try to engage in, I feel like I’m in a separate world from everyone else, and if I’m going to be in a separate world anyway, I’d rather do it at home.

A big part of this is concern for safety. Having fun can be dangerous. For a woman, it’s even more so. Doing things invites mockery, disappointment. [The popular idea that happiness lies in letting go of expectation is bullshit. Even if it were possible–which it isn’t; the whole premise stands upon the expectation of being happy–letting go of expectation generally results in getting taken advantage of and having to deal with other people’s shit.] A woman showing happiness or having fun is perceived to invite comment and attention whether she wants it or not. A happy fat woman is an insult to humanity, and there are plenty of people with no qualms about letting you know it.

But to return to my original point, it’s hard to do things you like if you don’t like anything. And it’s hard to like anything if you hurt deep in your soul and nothing soothes the pain, much less gives you joy.

I used to like things. I used to like playing dress up and let’s pretend. I used to like writing. I used to like singing and playing the guitar. I used to like doing art and craft projects. I used to like flirting, and grand romantic gestures. Somewhere along the way, I lost my love of those things, maybe when it became clear to me that they all (with the exception of singing and playing guitar, which I sometimes did around others) were activities performed in isolation. Or better so; one of my sisters teases me to this day about pretending to be a mountain lion when I was small, as if that’s the stupidest thing anyone ever has done, as if that’s all she remembers about me. Perhaps it is. As for flirting and romantic gestures, they’ve been ill received, unreciprocated, or plain ignored. I’ve been told time and time again that one should do things for their own sake, not for hope of gain (there’s the expectation thing again). Human beings are social animals, though–or are supposed to be; I’m not sure it applies to me. Putting oneself out over and over and never getting anything back is draining. You can only host so many dinner parties without being asked to one before you give it up as a bad job.

The last thing I remember doing solely because I wanted to was enrolling in dance classes when I lived in California 30 years ago. And though I chose it, my participation was not unequivocally positive. I was all too aware that I’m tall and large, not a “dancer” type. Being present in my body in an expressive way sometimes hurt on an emotional level. That led to my seeking a degree in Dance Therapy, but when I got turned down for grad school, something in me broke. Sometimes I think it broke permanently. I once told my husband he’s never known the real me, because the real me was passionate about a lot of things. I’m not passionate anymore. I’m just tired.

In many Western magical systems, Wands, both the tool and the Tarot suit, correspond to passion and the will. This used to bother me; the two don’t fit together in my head. As I thought about writing this post, I saw that passion and the will work in tandem. You might start something out of passion, but will keeps you on task when passion ebbs. In the same way, passion can prop up a flagging will. Without passion, I’ve run the last 25 years or more on will alone, and I haven’t got any more.

Walking down the street the other day, I felt the effort in my legs and back. My thighs are weak; climbing a single step is a challenge. I don’t like this state of affairs, but I lack both the will and the passionate desire to change it. When I walked three miles a day, every day, and did Pilates most days as well, I was passionate in my self hate, in despite for my body. I don’t want to go back to that place; hatred is a poor motivator. A lot of people engaged in body positivity talk about practicing “joyful movement,” but I don’t find joy in moving. That’s why I stopped. People talk about following your dreams, too. What dreams I once had died years ago. Nothing new has sprung up to take their place.

I’d like to feel passion for something again. I don’t know how to get it or where to find it. I especially don’t know how on my own. Conventional wisdom, especially in the USA, holds that you’re supposed to be able to do everything on your own, without help–that “no expectations” thing again, never mind that no one really achieves anything on their own, without the help or input of a single other person along the way. I don’t trust others, though. I’ve carried too much, too long. I’ve been patient with other people’s issues and cleaned up other people’s messes. I’ve made things nice for others and supported others in crisis without ever being asked. When do I get something back?

Maybe it’s the depression talking–the depression has been strong for the last few weeks–but I don’t experience any sense of fulfillment from doing things. It seems to me I used to, a long time ago, pre-anorexia. But just as losing more and more weight did nothing for me then, nothing does anything for me now. People say, “You’ve written seven books! That’s an accomplishment!” and I feel nothing. When I think about “becoming less sedentary,” I don’t expect it to do anything for me, either. Being sedentary isn’t too uncomfortable. It’s far less uncomfortable than the idea of forcing myself into activities I don’t enjoy that aren’t going to change my quality of life in any way I can foresee.

A week ago I saw my medication manager and had my antidepressant bumped back up; we’d lowered it because the higher dose, though it made me feel better, came with some irritability. It didn’t take me a week to notice and question that. Noticing I had fallen into a bad depression again took over a month, because depression is so normal for me. Anyway, today I woke up feeling a bit more positive. I still don’t know if my ability to feel passion will ever return. I hate the slowness of taking baby steps toward change, but I suppose for now, being able to get out of bed without asking why and being able to get dressed instead of wondering whether it matters will have to be enough.

 

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Ugly

Beauty has always moved me. Ever since my early childhood, works of art, music, dance, words and all beautiful things have filled me with ineffable emotion, something between extreme sadness and desire. I remember being five years old and listening over and over to the piano cadenza from Bach’s 5th Brandenburg Concerto on our old record player, because it was just so wonderful to me. I have no rational explanation for my response. Pathos as a rhetorical device is meant to stir the emotional recollection of lived experience, but how much lived experience could I have had at such a young age?

When I experience beauty, I do not want to own it. I want to become it. Not to influence people, or to elicit a response. Just to be it, to embody that transcendent quality. I want to be beautiful.

This is a problem. It’s a problem for numerous reasons, but I’ve come to see that first and foremost, I don’t feel beautiful inside. I feel rotten. I feel tainted with an ugliness that no superficial change can remedy. No makeup, no clothing, no weight loss or addition of muscle can fix it, because ugly is my identity. I feel it as strongly as I suppose others feel their gender identity. It’s the core of my being, my basic nature.

I’ve only spoken to one other person who gets this and feels the same, though I know many who’ve told me they recognized early they could never be beautiful and so never aspired to it. It doesn’t seem to eat at them as my desire for beauty does me. I have a hard time understanding.

Writing about this is extremely difficult. Trying to articulate it brings tears to my eyes and makes my throat close up. It’s one of those places where I wish I could just rip the sensations and emotions out of my stomach and hand them to someone: “Here, try this on and you’ll know.” Because this reality is beyond words, beyond expression. As I can’t remember a time before beauty moved me, I can’t remember a time before the absolute certainty of my own ugliness. I am Quasimodo in a world of Esmereldas. Probably beauty moves me the way it does because I know I lack it.

The pre-verbal quality of this feeling makes me wonder if it isn’t something I absorbed in the womb. I know my mother didn’t want another child by the time I came along, and whatever face she showed to the outside world, it wouldn’t surprise me a bit if she prayed to miscarry early. The religion I was raised in doesn’t put much emphasis on Original Sin, but Presbyterians do subscribe to the doctrine of predestination; maybe I somehow caught on to this early enough to understand, to believe myself Not One Of The Elect. The feeling of being flawed goes that deep. The pictures in my book of studio portraits taken between the ages of a few months and six show a cute, blonde girl, but I remember feeling unattractive from about four on–a feeling which worsened over time, as my age peers continued to poke fun at my looks. When I got old enough to recognize that girls objectively less attractive and larger than I were still accepted into the ruling cliques and didn’t face the same derision, the fact cemented my opinion that the flaw in me must be something other. Not a superficial wrongness, but one flowing outward from my heart, poisoning everything about me.

I fear photos and mirrors; I believe they must inevitably show me for what I truly am. But when I do look, it’s not too bad. Sometimes I can critique a specific part of my body; “I don’t like the hanging flab of my upper arms.” Mostly, I don’t associate the images with my sense of self at all. Even gazing at my naked body in a full length mirror, my body with its rounded belly and vast thighs, I see no one in particular. Just a woman. Not one who fills me with distaste. Not the inner ME, either. The inner ME is the sense of wrongness in my stomach, the one I can only ignore but never banish.

I suppose calling this wrongness “ugliness” is something I learned. We’re indoctrinated early on in the truth that a woman’s value lies in her beauty. I have no value, therefore I lack beauty. I guess that’s how it worked.

People sometimes try to reassure me that I am, in fact, not bad to look at. I try to reassure myself. But all the words, all the times people have said “You’re beautiful,” make no difference, because I don’t feel them. You cherish what you find beautiful, don’t you? You nurture and protect it. I don’t feel people show that impulse to me. I don’t feel cherished. I don’t believe anyone thinks of me when I cease efforts to thrust myself into their faces. I don’t believe anyone has held me in their hearts, wondered about how I am and what I’m doing, obsessed over me the way you do in the first throes of an infatuation, when your life hangs on the possibility of a date or a phone call. Outside the boundaries of interaction, I cease to exist. No one works to impress me, no one plans for my delight. And I know, according to some, you are not supposed to require these things. Women especially are supposed to reach for what they want. But it’s hard, so hard, to reach, and reach, and reach, sometimes to achieve, but mostly to fall, and swallow the failure, and move on. It empties you out, after a while, reinventing the self over and over again. Knowing that I operate without a net, that no one will catch me if I fall because no one sees me falling (or worse, see it and don’t care), is not a source of strength. It makes me question why I bother with anything at all.

When I set out to write this post, I meant to address the complex relationship between beauty and value women in our society suffer from every day. It’s devolved into something else, an exploration of the constant pain at my core, where value, and appearance, and the simultaneous need for and fear of regard tangle into a Gordian knot of Titanic proportions. I’ve been trying to untangle it for almost forty years, and always, just when I think I have one thread separate and laid out clean, the others contract into an impossible snarl. I’ve tried the Alexandrian solution, but the problem isn’t one I can cut through. Other people contributed to it; I need other people to do their part. But I can’t count on that. So the question always returns: How can I be okay without other people doing their part? I can’t. I used to try, and once upon a time I was able to salvage a few passions from the ones damaged beyond saving. If not this, then that. If not that, then another thing. I used them all up years ago; I have nothing left. People have taken it all and never put anything back.

They don’t put it back because I don’t matter because I’m ugly. And so it continues.

I write this fully aware that I am in a bad depressive state right now–bad enough that I booked an early morning appointment with my medication manager for Monday, though both Mondays and early mornings are things I try to avoid. This state may have been triggered by lingering physical illness, or by sticking my toe into an ocean of hurt my last therapy session, but I can’t get on top of it. Lately I reduced my antidepressant because the higher dose combined with my mood stabilizer, though it made me feel really good, also caused severe irritability. I would far rather have the irritability than this blackness, where all I can feel is the pain in my heart. I can’t bear to leave the house for fear of eyes upon me, for fear my inner flaw will show plain and even if others are too polite to mention it, they’ll mock it in silence. I imagine voices with the ironic tone peculiar to the Grosse Pointe of my schooldays, where every compliment hid barbs and every glance flayed to the bone.

Ugly. Ugly. Ugly.

 

 

Before You Bemoan Trigger Warnings and Coddled Youth…

Today, I got triggered because my jeans were too tight.

“Oh, for fuck’s sake,” you may be thinking. “That’s ridiculous. Aren’t you taking this whole concept a bit too far?”

Well, yes and no. Yes, it’s ridiculous. Even I think it’s ridiculous. And no, I’m not taking it too far.

See, I have profound issues with my body (if you’ve read any of my blog posts, you already know this, or at least suspect it). When I was 17, I almost died of anorexia nervosa. I struggled with a severe eating disorder for years after, and have never felt entirely comfortable in my body. I’ve put on a large amount of weight in the past five years or so, and everything that makes me notice it brings all those issues to the surface. Clothes that no longer fit right. The sense of being compressed into too small a space, a space I once inhabited with (relative) ease.

This is what it feels like: I can’t breathe, and I don’t know whether it’s from the tightness of my clothes or something in my head, a stress response. My heart races. My body starts to shake. All the horrible things I’ve ever thought about my body, all the horrible things anyone has ever said about my body, fill my mind, pushing out everything else. I’m terrified to move. I know beyond a shadow of a doubt that something is happening over which I have no control. The idea of control in itself is vague and illusory. I feel helpless. I want to run and hide, or fight, but I’m incapable of neither. There’s no safety wherever I turn.

All from squeezing myself into a pair of too-small jeans.

Breathe.

I have a lot of triggers like that: triggers other people might consider “stupid” or trivial. I haven’t actually been through a lot of things that were life-threatening in the moment, and the ones I have experienced pale beside earlier sustained trauma. Yes, it was terrifying in the moment being raped. But in all honestly, it didn’t mark me the way it marks other people. I got over it fairly quickly. I can read graphic descriptions of rape and other physical violence. I can even see them on TV or in movies, though I don’t like them. It’s the little stuff that gets to me, because my trauma was day-to-day over a long period of time. Everyday things other people don’t notice are loaded in ways that are hard to explain. Tight clothes. The idea of exercise. I have a hard time with the mere word, “exercise.” Playing music. Trying to make conversation. Leaving my house, which is mostly safe. People not being honest about what they’re feeling–I guess that may be more common than I suppose. Hunger, which I experience several times a day. Imagine having a fight or flight response every time you get hungry. 

My point is, no one can know what’s going to trigger another person. You can’t say, “Oh, that. I don’t have any trouble with that, so you shouldn’t either.” You can’t say, “Your desire to be safe and informed in this area is a symptom you need to pull up your panties and grow up. The world has bad stuff in it; get over it.” Triggers don’t work that way. Instead of judging by your own experience, maybe try showing some compassion and trying to understand.

I think most people want things to be easy and to fall into neat categories: THIS is something that could be triggering and THIS isn’t. THIS is normal human experience; THIS is beyond the pale. But mental health issues don’t work that way at all. Definitions change all the time as understanding changes. In my lifetime alone, homosexuality was removed from the DSM; I was hospitalized with men whose only “illness” was “being gay,” and mental health professionals didn’t begin to address the results of the ways they were treated because of it. In my lifetime, Manic Depressive Psychosis has become Bipolar Disorder, has become Bipolar Spectrum Disorder. Most people still view PTSD through a single lens. The idea of CPTSD is catching on, but it’s still not an “official” diagnosis.

So, you know, shut up about other people’s triggers. I know it’s difficult to build a standard policy on shifting sand, but that’s not our problem.

That’s all.

Emotional Labor and Mental Illness

I think it was about a year ago when I first ran across the term “Emotional Labor.” I’m not alone; although the concept has been a staple of sociology for thirty years, it’s only recently I’ve seen it discussed on a wider scale. If you want to read more about it, this is a pretty good article, but in brief, emotional labor is the effort we take to regulate emotions and the expression thereof. It extends to modifying environments to make them more welcoming and comfortable, keeping track of details, and various types of nurturing. In other words, what used to be termed “Women’s Work.” Sociologists often make a distinction between “emotional labor” and “emotional work,” where the former takes place in a job setting while the latter is geared toward home and relationships. I personally find this distinction unnecessary and even a little offensive, so for the purposes of this post I’m using the terms interchangeably.

When I first saw the term (I think it was here), it was like a lightbulb flashed in my brain. “Oh!” I thought. “This is the piece I’m missing!” Here’s some context: I’m married, and have been for twenty years, to a wonderful, feminist man I love dearly, who is my best friend. If any of those pieces had been missing, I wouldn’t have married him. And for the most part, we have a great marriage. However, like any couple, we have our disagreements and rough spots. There’ve been numerous times in our relationship I’ve tried to communicate things to him and felt like I just wasn’t getting through on some level. The idea of emotional labor, the fact that my work to keep our household running smoothly is often taken for granted and sometimes plain invisible, gave me a way to explain in words he understood better.

I don’t know how much the division of labor in our household is due to the way gender socialization works, and how much is our particular characters and aptitudes. While I like to think of myself as a dreamer, the fact is I’m quite a practical person, with an organized mind and an ability to keep track of what goes where and when which thing needs to happen. My husband is the dreamer, and his great memory for detail sometimes leads him to get bogged down in minutiae, while his perfectionism causes him to develop intricate processes to accomplish relatively simple tasks. He’s capable of huge compassion for others, but not so much for himself, a tendency he attributes to the religion he was raised in. I’m very open and outspoken about my emotions and my process; him, not so much. While you could find reasons for all this in the different ways men and women are taught to behave, you might, if you knew us well, see these qualities as part of our individual identities.

But there’s one place where my husband and I definitely differ: I have a mental illness, and have spent more than half my life learning how to manage it. While he experiences intermittent episodes of depression, they’re not the life-threatening kind that leads one to intensive treatment. Consequently, he hasn’t had to do the emotional work I have, and gets along all right without it. He’s a great conversationalist, facilitator, and mediator. People feel safe with him. But he doesn’t have the skill I have at delving into deep matters or my comfort level with addressing extremely uncomfortable personal topics. When your emotions can kill you, when you’ve been held on a locked hallway until you learn (or make a viable pretense of having learned) to deal with them, you become adept at self questioning and self regulation.

Of course, not everyone does. Some people with mental illnesses are ultra resistant, some don’t have the insight and aptitude, some fall back into old patterns when they get into triggering situations, and some are simply too ill. I’m talking about those of us considered “high functioning” in one area or another: by reason of intellect, or ability to appear “normal,” or ability to hold a job. The people you wouldn’t immediately peg as having mental health issues. And some high functioning people don’t learn either, because they can manipulate or coerce others into doing their emotional labor for them. Some use their illness as an excuse not to do their own emotional labor. Our former housemate was one of these. From the outside, she was interesting, intelligent, and capable, a fun person to be around. It was only once you got close that the demands started, and these could take the form of anything from long conversations over coffee trying to “process” some real or imagined slight to waking people up in tears at three in the morning to spend three hours talking her through an event from days earlier. Any attempt to make her do her own work was framed as retraumatizing. Because, face it, emotional labor isn’t usually fun. It’s hard, and it’s often painful, and it feels much better to have someone else do it for you. It feels like being taken care of, and it is. She refused outright to go to therapy because therapists “wouldn’t understand” her, and this necessitated interventions a couple times a week to keep her from blowing like a steamkettle. Living with her was draining and frustrating on a level I’d never experienced before, and haven’t since, although one instance came close.

The psycho ex-housemate stuff will become relevant later, trust me.

Anyway, I’ve spent a good portion of my life doing the emotional labor of others. Trying not to trigger my repressed parents. Talking friends through fights and breakups. Reassuring people of their worth and attempting to shine a different light on their problems. As I said, it’s something I’m skilled at, trained in, even, since my degree is in Dance Therapy. It’s not to the advantage of my personal boundaries that I’m highly empathetic, because when I feel something “off,” I’m not content to let it lie. Doing so makes me uncomfortable; I have to get it out in the open. Also, I find trivial conversation tiresome. I’m always looking for a deeper level of interaction.

The problem is, when I exert my energy on the emotional labor of other people, I often drain myself to the point of not being able to practice self care. Before I know it, I’m empty and spiraling down into a depressive cycle. This is why, when this meme popped up on Twitter the other day, it really resonated with me:14040135_10157345413950254_692207246828710712_n

Now, the above doesn’t exactly articulate my experience. It doesn’t take me a huge amount of energy to maintain my high functioning persona, mostly because I don’t bother with doing so; if I have it, I have it, and if I don’t, I don’t. I have an extreme distaste for masks and personas of any kind, and I never had much use for societal expectations (which is no doubt one reason I’ve always had a hard time working a “job” in the commonly understood sense). And when people rely on me for emotional labor, I generally come through. However, as I already said, I often do so at the price of my own mental health. And that’s bad.

Using my marriage as an example, and getting back to the psycho ex-housemate: I was involved with her for one year. My husband was for five, and during that time he did the bulk, if not all, of her emotional labor. He was the one she woke up in the middle of the night when she was upset and needed talking down. He was the one who never had time or space for his own activities, because he always had to be available to her. He was the one who faced The Wrath if he went down to the corner store for a beer to drink during their scheduled TV date and she flipped because she decided his absence meant he was going to blow her off. And, by the way, if you think this sounds abusive, IT ABSOLUTELY WAS. Bear it in mind: Refusing to do your own emotional work inevitably makes you toxic.

The year I spent in the same house with the pair of them, most of my energy was spent trying to get him out. When I succeeded and we moved far, far away, there was a consequence to both of us I hadn’t foreseen. He’d had to do so much emotional labor for psycho ex-housemate that he wanted no part in doing any more for anyone, himself included. I was so afraid of being like, or even appearing to be like, psycho ex-housemate, that I couldn’t bring myself to ask him to. I expected that once we got out of the toxic situation, things would naturally assume a more normal condition. We’d be able to devote more time to each other and our mutual needs, like looking after our home and sharing chores and responsibilities, without the looming threat of psycho ex-housemate coloring every interaction. I hadn’t counted on him being so damaged, and simply worn out, that what I considered “normal” was beyond his ability even to consider. And because I hadn’t yet run across the concept of emotional labor, I had no way of addressing the situation.

On top of that, we got involved with another set of people who didn’t do their own emotional work. Because of my nature, and because I tend to believe doing the emotional work of others is my only value and setting boundaries will cost me friends, I took the bulk of it on. My husband was perfectly willing to listen to me vent about it, and even join in, but didn’t, or wasn’t able to, support me the way I wanted in the moment. I developed some physical health problems, including suffering the two miscarriages I’ve mentioned in other posts. There, too, I didn’t get the support I needed. Neither did my husband. I honestly don’t think we’ve done the emotional work around those losses that we should as of this day. There are a lot of reasons for that, not least that miscarriage carries a certain stigma and isn’t talked about much, but also my deep feeling that children are something more worthy and desirable women get, and I was asking too much by wanting them. Anyway, in the end, I broke.

There’ve been times along the way when I’ve been more functional than not, but I’ve spent basically the last twelve to fourteen years broken from doing too much emotional labor for others and not getting the help I needed doing mine. That’s the better part of my marriage. I have regrets about it I can’t even articulate. I’ve blamed myself for not being strong enough and for not being more demanding, and for not standing up for myself. And I’ve blamed my husband for everything you can imagine and probably more you can’t. But in the end, blame doesn’t do either of us any good and doesn’t matter. It’s how to go on that matters.

If there’s a lesson here, it’s this: As much as possible, do your own emotional labor. Whatever it looks like: caring for your space, finding a place and support to talk through your feelings, taking a long bath, learning how to paint or dance. If there’s scary stuff you need to work through, find a therapist. If you have health issues, get them looked at. Don’t rely on others to do the work, or invite you to discuss things, or prod you into it. Especially don’t do this if you know they have a mental illness, even if they’re really good at it. Being really good at it means they probably have to do more emotional labor in a week than you face in a lifetime. Okay, that’s hyperbole. But seriously, do your own work. Otherwise you risk damaging the people least able to bear it. People you love.

And I guess that’s all I have to say.

 

 

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Ode to my Therapist

After almost forty years of mental health treatment, I’ve finally found a therapist who “gets” me.

You’d think it wouldn’t have taken so long, or been so hard. It shouldn’t take so long or be so hard. The fact that it is, is, in my opinion, criminal. I’ve touched on this in previous blogs. The last thing a suffering person needs is to have to ascertain whether or not their care provider knows what they’re talking about, or whether they’ll be treated as a human being with an individual identity. This is especially important for people with mental illness, who often aren’t in any position to challenge providers or stand up for themselves.

To be fair, my last therapist wasn’t bad, and I stayed with her a long time. She did a lot for me, including actively involving herself in my disability case and taking me as a pro bono client when I didn’t have the means to pay her. Several of my therapists haven’t been bad, precisely. But they’ve been limited in their ability to understand me, because of the nature of their training, because of misapprehensions about mental illness that some theories of mental health actively encourage, because psychology and psychiatry are, in fact, fairly new disciplines and deal with matters that are hard to pin down. All the definitions change as knowledge increases. So, for about forty years, I’ve been in and out, grasping the rope when I needed it most and swimming on my own when the rope couldn’t help anymore.

The thing is, psychologists and psychiatrists tend to cling to whatever was the current model when they were in school. They were given a hammer, so everything looks like a nail. And a lot of them seem both incapable of recognizing evidence showing that some things are not nails, and reluctant to put down the hammer in favor of an impact driver or framing saw when necessary.

Aside: Some years ago, I considered going into Clinical Psychology. The program I was considering required GRE scores, so I registered for the test and picked up a GRE example test book in Psychology. Literally 75% of the questions were Psych 101 stuff–like, “Who is considered the founder of child behavioral psychology?”–and statistics. And I thought, “There is nothing here about helping people. It’s all about fitting people into boxes.” So I didn’t take the GRE, even though I’d already paid for it, and I never got an MA in Clinical Psych.

What makes my therapist so unusual? She listens, and she believes me. You might think that’s only to be expected from someone you hire to do those very things. I certainly did, forty years ago. I learned pretty quick it’s not at all the case. A lot of therapists don’t listen well. They’re too busy trying to remember how to show they’re listening–“It sounds like you’re saying you’re angry. Is that right?”–to actually do it. And even the ones who listen pretty well are not very good at believing what they hear unless it fits into their preconceived notions about you. If and when the two contradict each other, they decide you must be wrong about your experience and try to convince you they know better. They are so afraid of believing a lie or confabulation–things which happen seldom–that they’re prone to cast shade on the truth. If you come in with a diagnosis, anorexia nervosa, for example, they check what you say against the current theory about the diagnosis and disregard what doesn’t fit. People with anorexia are obsessed with control, they don’t want to mature, they’re afraid of female bodies, they lie and manipulate. Check. Don’t try to tell them otherwise. They know.

Sometimes, too, therapists are so uncomfortable with what you’re saying, or so unable to relate, that instead of focusing on your needs as a client they try to steer the conversation to a place where they feel more secure. This is why I stopped seeing my last therapist. In one of my last sessions with her, I said I was trying to come to terms with the fact that I’d probably never have children of my own. She asked me why I thought that was true. I said I was forty-six and not getting any younger, my menstrual cycle had simply stopped and no one would look into it despite my strong feelings that it wasn’t normal, that I was depressed and poor and my sex life was practically nonexistent. She said, “Well, those are all valid reasons. So, how are you doing on the financial front?” It felt like a slap in the face. And I knew without a doubt that she, a super fertile mother of four kids, had no idea what I was going through and could no more relate than walk on the moon. I’d been dissatisfied with our meetings for a while. That was the last straw.

I’ve been seeing my current therapist for almost a year, and she’s been there all the way. In setting up my treatment plan (which, by the way, is something I never had before, or at least something no practitioner ever shared with me), I mentioned my trouble with childlessness. She said, “Sounds like you have grief over that.” Nailed it in one go. One of our first sessions, I was trying to describe my eating disorder being about a need for something I had a hard time articulating. She suggested, “Control?” I said, “No, not that,” and she said okay, and that was the end of it. She waited for me to find it instead of putting words into my mouth or slapping on a convenient label. She lets me lead, and lends a shoulder when I need one. She believes I’m intelligent and articulate. She doesn’t talk down to me, or tell me my experience is impossible. When she suggests something I know doesn’t work and I tell her so, she doesn’t say I haven’t done it right or need to do it more. She respects my right to say, “Not now,” or flat out “No.” She’s been there all the way, and I feel safer with her than I’ve ever felt with a mental health practitioner. I can be real. I don’t have to evaluate every topic to determine whether that’s somewhere she can go. I can do my own work, because I’m not additionally saddled with doing hers.

Some of this may be possible because of my own personal growth. Last year, in this post, I said,

In over thirty years of trying to get support and help for my condition, I have been smarter and more knowledgeable about my experience than 100% of the mental health professionals to whom I’ve turned.

Once I owned that as fact, I vowed I would be up front about it if I ever went back into treatment, and when I did my intake at Mental Health this time around, I looked the social worker straight and the eye and said, “I am smarter than you. It’s likely I’m smarter than everyone in this building.” This is not something I would have been able to do before a few years ago.

That social worker said, “Okay. I believe you.” And now she’s my therapist.

When I went back to Mental Health, I didn’t intend to do therapy at all. I just wanted my medication managed. I’m glad, that one time, she talked me into changing my mind.

Illness Isn’t A Performance

I’m tired of performing my illness.

If you have a chronic illness or a disability (physical or mental) you may be nodding right now. If you’re able bodied and neurotypical, you may be puzzled. What the hell does it mean to “Perform an Illness?”

Maybe I should have led with, “I’m tired of the need to perform illness.” Because it’s not just me. It seems like this past week I’ve seen an unusual number of articles, blog posts, and tweets about performing illness, from this discussion of what constitutes a “real” migraine to my friend being told she doesn’t “Look Sick” (a classic), to a couple of people writing about how tired they are of curating media presence in order to appear to be “doing” their illness “right.”

I’m not the first person to write on this topic. I have no doubt I will not be the last. If you’re here, you probably have some interest in what I have to say, or are at least curious. So here’s my 2 p.

First off, for latecomers to the discussion:  What does it mean to “perform” an illness?

Simply put, performing an illness is aligning the way you present as a chronically ill person with the expectations of somebody who is not yourself. It can also be aligning your presentation to conform to the expectations of a group you’re part of. (I’ll be addressing this eventually, probably in a different blog post.) What your performance looks like depends on context, and it may be affected by things like the identity of the individual or group as well as your own reasons for performing. It might look like moaning a little when you’re enduring a migraine so your partner understands they can’t expect you to cook dinner. Even people whose illnesses aren’t chronic may do it, exaggerating hoarseness and sniffles over the phone so the boss believes it when they call in sick.

The need to perform illness always stems from ableism, whether internal or external. Part of any privilege is the tendency of people with more power to define people with less. Thus, you get white people defining what it means to be Black, thin people defining what it means to be fat, and able people defining what it means to be sick and/or disabled. These definitions are invariably rooted in stereotypes, because they’re created by people who are outside the communities they presume to address.

Applying stereotypes to living, breathing human beings is always damaging, but a unique aspect of the stereotypes about illness is that ill and disabled people can sometimes find benefit in “playing to” them. The stereotype of, for example, fat people as lazy, overindulgent, ignorant of the benefits of “healthy” food, and a drain on resources is overwhelmingly negative. A fat person can alleviate some of the negativity of the stereotype by “playing to” a slightly different one, the “Good Fatty,” i.e., a fat person actively engaged in not being fat through exercise, adopting “healthy” eating habits, undergoing surgery, or a combination. In the case of the ill or disabled person, performing illness to suit preconceived notions of what it looks like usually has results that appear positive. You can gain sympathy, for example, or simply get a rest from having the validity of your illness questioned. The flip side is that failing to perform your illness in a way that fits the stereotype can result in negative consequences. A person who lays aside a needed mobility aid for a short period of time may encounter hateful judgments about whether or not they’re pretending to be ill. Likewise, a person needing accommodation in the workplace may be deprived of it if they don’t need it every single time, or a person with a mental illness may be accused of faking it unless they consistently act irrational, depressed, or whatever other way is considered normative for the illness.

To make matters worse, even people who should know better, like doctors and advocates, can practice ableism when they adhere dogmatically to diagnostic criteria. “Official” designations in the DSM and other resources might be helpful in determining what code will persuade an insurance company to approve treatment (and the need to gain approval from people whose main concern is cost rather than health comes with its own set of problems). However, when dealing with real people, it’s important to remember the experience of illness rarely goes by the book. Some symptoms may be common; others less so. Some diseases manifest differently in different people, or have different forms. We don’t know everything there is to know about illness, whether physical or mental. New syndromes are being identified all the time. The best way to determine whether a person is sick and/or disabled is to listen to that person. Of course, this often doesn’t happen. The Western world has an almost pathological fear of being taken advantage of, of people getting things they “don’t deserve,” and this plays out in its treatment of sick and disabled people.

Here’s an example from my personal experience: A number of years back, during a major depressive episode, it occurred to me that I suffered a real mental illness that prevented me from engaging in the world in a lot of ways, and I might qualify for disability support.

I need to pause here to say that writing the last sentence triggered a LOT of anger in me, for a LOT of reasons. I started experiencing symptoms of depression and bipolar disorder in early adolescence. I developed an eating disorder so severe I almost died from it, and doctors told my parents at least once that I know of that I had a mental illness so severe I “would never be able to take care of” myself [whatever that meant]. Yet the reality of my illness didn’t sink in until I was past forty. I don’t think this is due to the illness, itself. I knew at a young age that something odd was going on in my brain and I begged for treatment. But Western culture is so ableist that it actively encourages sick people to ignore their experience when it prevents them from conforming to expectations. You can see this in every television commercial for cold medicine where a miserable, coughing, sneezing, feverish person downs a magic elixir or pops a couple pills and goes right back to the grind, symptoms relieved. I cannot understand why this is promoted as positive behavior. It doesn’t serve people; it serves employers who can’t be bothered to treat workers as human beings. There may be times when it’s absolutely vital to attend a meeting or intervene in a crisis despite illness, but in all honesty, those times are few and far between.

Anyway. I decided to apply for disability. The process of doing this in the US is horrendous. It’s based on that pathological fear of people getting something for “nothing,” and the powers that be require sick people to jump through a lot of hoops to prove they’re really sick (unless you’re on your death bed; I have a few friends who were granted disability pretty fast when they were not expected to live more than a few months).

I filled out the on line application and it was denied. I learned later that applications are pretty much routinely denied, as a way to sort out those who are “really serious” about pursuing the matter from those who apply on a whim. Since the application is long and difficult to complete in the first place, that seems excessive, but that’s the way it works. I appealed. The appeals process stretched out over two years. It involved gathering documentation from every conceivable source, going back for ten years. Every doctor I’d seen in that time had to provide a statement. My therapist recommended a good lawyer. Without him, I never would have gotten through the appeal. Even with his help, I was tempted to give up more than once.

Because of ableist attitudes, my doctors disagreed as to whether or not my illness constituted a disability. Those who knew me best asserted that it did. Others, who’d seen me rarely or only on good days, said it didn’t. My psychiatrist at the time proved the biggest stumbling block, because despite the facts that I’d never been able to participate in a “normal” job more than eighteen months, had never worked full time at all, and participating in standard workplace environments made me verifiably psychotic and suicidal, he claimed I could handle a job if I “really wanted to.” That is, because I didn’t present as irrational during my meds checks (fifteen minutes once every couple months, the only time he saw me), I was not disabled.

I had to have a hearing before a judge and a panel of experts. My lawyer advised me to let my hair grow out, not to care for my appearance, and to show up in sweatpants. That is, I had to perform my disability right. Putting on what I considered the appropriate clothes to appear before a judge would have been a mark against me. Breaking down in tears during the hearing was a plus. The fact that I’d managed to graduate college was a minus, because people with severe mental illnesses don’t complete college. Etcetera.

In the end, the judge decided in my favor. At this point, some readers may be angry because I “gamed the system.” I’m angry because the system as it is required gaming for me to get my needs met. At the same time as I was going through all this, a friend in the UK was suffering a major depressive episode, too. She went to her doctor, told him what she was going through, and he gave her a slip of paper saying she needed disability support because she couldn’t work due to her mental condition. That was IT.

My experience is one example of the need to perform illness for the able. The consequences of requiring sick and disabled people to perform stretch much further and have an extreme negative impact on our lives. They’ll continue to do so as long as able people are the ones defining disability. One thing I notice a lot is how much the very idea of disability, at least in the US, depends on the normalization of unhealthy aspects of capitalist/corporate culture, like quelling your symptoms with cold medicine so you can go back to work. The idea is, if there’s any way at all you CAN conform, then you’re not considered disabled, no matter how much physical or mental distress you might be in. In this culture, the only way to “earn a living” (in itself a horrific concept) is to work at a paying “job.” Yet jobs providing a steady source of income take limited forms. Even with accommodation, many with chronic physical and mental illness cannot participate in these forms. We may be suited to other work where remuneration is less automatic (or doesn’t exist at all). But there’s always the fear that if you make too much noise about this other work, you’ll sacrifice the support systems that allow you to do it at all.

Here’s another personal example: I’m an author. I’ve published six books in my Caitlin Ross series (gratuitous promo: check out a sample!) As a self-publisher, I do virtually all the work on every book myself. I do the formatting, the interior design, and the editing, in addition to writing the numerous drafts of every volume. Some days I work twelve hours at a stretch. Other days, I can’t work at all due to one or another of my illnesses.

I’m not independently wealthy. The ONLY reason I can engage in my career is my disability (well, that an an understanding partner). The extra $400 a month (yep, that’s all) and the insurance covering my medications assuages the guilt of not “earning a living” enough so that I can focus on writing. Yes, some (most) authors work at full time paying jobs aside from writing. I cannot do this. Working at a job-job takes so much out of me that I simply cannot do anything else. I wish I didn’t have to explain this every time, but I feel like I do because of voices both internal and external that scream “BUT SO-AND-SO WROTE [Bestseller[ WHILE WORKING 12-HOUR SHIFTS AT WALMART; WHY CAN’T YOU?”

Anyway. I live in fear that some government official will see those six novels, or get wind of the days I work a lot, and decide, “If she can do that, she can go get a job at the gas station down the street,” and cut my disability. Because in the mind of an able person, time is time and effort is effort, and what’s the big deal? Even my last therapist made cracks about “people on disability hanging out scribbling in the coffee shop instead of doing something productive,” as if the ability to do one is the same as the ability to do the other. Sick and disabled people are constantly walking this tightrope between performing the disability well enough to be believed and maintaining quality of life, because to able people having any quality of life at all is a privilege to which they alone can aspire.

Really, as far as I can see, the only way of doing away with the need to perform illness is to redefine society’s relationship to it and make room for people to live their lives in the best way they can. It would require a sea change in our relationship to the very concepts of ability and disability, and it would start with listening to sick and disabled people and believing what they say about their experience.

I suppose that’s too much to hope for, but I can dream.