Leave Me Alone

My case manager keeps calling me.  I’ve been avoiding her for the last few weeks because I just can’t fake it anymore, and I’m afraid if she sees how bad things are, I’ll get hospitalized.  That whole agency is really enthusiastic about hospitalizing people, and I feel like I can’t trust any of them.

I mean, they haven’t exactly done anything that would inspire trust.  This case manager’s not quite as bad as the last one, but she’s still pretty much useless.  The sum total of what she’s done for me in the months I’ve been seeing her is that she brought me one housing application and took me grocery shopping once.  Pretty fucking impressive case management, huh?  I still have no therapist.  I’m still constantly broke, behind on all my bills, with no hope of ever catching up.  I’m still effectively housebound.  But hey, she took me grocery shopping once, so clearly they’re rendering highly effective mental health services.

I want to pick up the phone the next time she calls and scream, “Stop fucking calling me!  You’re not going to help me, so just leave me the fuck alone!”  I want to lash out.  I want to make her hurt because I hurt worse, and instead of helping like she’s supposed to, she just leaves me to suffer alone.  I mean, she’s never once asked about my symptoms or how I’m coping.  Nothing beyond the rote, “Hey, how’s it going?” when I first see her.

Eventually I’m going to have to answer the phone or she’ll send the cops after me.  That would trigger the hell out of me, and I’d probably end up in the hospital.  Of course, if I try to terminate, she could use that as “proof” that I’m refusing necessary treatment (hah, what fucking treatment?) and get the cops to drag me off to the hospital.  It feels like I’m screwed no matter what I do.  I just can’t keep seeing her and acting like everything’s okay, knowing that if I said things weren’t okay, the only additional services I’d get would be hospitalization.  I can’t see her because I just want to scream at her.

I don’t know why I’m so angry at her.  I don’t like the person it turns me into: it makes me want to hurt her, to make her cry.  I don’t like the part of me that makes me want to take out my pain on other people.  There’s no reason for me to be this angry at her.  I mean, I don’t even want to hurt my father like this anymore, and the things he did to me were far worse.  I want to destroy this nice but useless woman, and I don’t even understand why I hate her this much.

The Game

In college, I lived in the nerd dorm (a dorm just for students and professors in my integrated honors program).  We were big on games: chess, Risk, and Dungeons & Dragons were often played in the lobby as well as many video games (mostly MMORPG’s) in the TV lounge and computer lab.  But there was one game that was the ultimate game.  It was simply called The Game, and the only rule of The Game was that when you think about The Game, you have lost.  It was no uncommon to hear someone mutter, “Dammit, I just lost The Game!”  That was inevitably followed by groans of, “Goddammit, you made me lose too!”

The point of this, besides making all of you also lose The Game, is to express how I feel about positive thinking and gratitude in our culture.

There are times when I genuinely feel positive and grateful.  Those are nice experiences, and I relish them.  I also know that gratitude and positive thinking work for a great many people, and that’s awesome.  I’m glad people have found things that work for them and make them happier with their lives.

But my problem is how often people demand that everyone be positive and grateful.  There’s this moral imperative at work, and in a lot of cases it’s used as a way to silence people who aren’t feeling good, who lack things they need, who are pointing out real problems that need to be addressed.  Too often, positive thinking and gratitude are like The Game: if you think of anything negative, you lose, and you will be publicly shamed.

It’s my experience that it’s utterly unhelpful to tell people how they should feel about anything.  Not only is it unhelpful, but it’s often destructive and creates a cycle that makes people feel even worse.  Picture this scenario: I mention to someone that I’m depressed and anxious because I don’t know if I’ll be able to pay my rent, and their response is, “Well, you should just be grateful that you have a roof over your head at all.”  I feel invalidated–he doesn’t think my problems are important because other people’s problems are worse.  I feel anxious–oh god, I can’t say anything about this, and I need to be grateful, why am I not grateful yet, oh god oh god, come on, be grateful right now or he’s going to hate me, come on, what the fuck is wrong with you, it’s not that hard, just be grateful, for fuck’s sake!  I feel guilty–I shouldn’t have bothered anyone with my problems when other people are worse off.  I’m a terrible person, and I should probably just kill myself so no one else has to deal with me.  Now I feel worse, and I’m feeling like I can’t trust anyone to talk to them about what’s worrying me because I might be invalidated again.  Now I’m depressed, anxious, suicidal, and totally isolated.

I’m sure that the people who’ve told me to think positive or be grateful for what I have were trying to help, and I totally get that no one is perfect and always knows the right thing to say to someone in distress.  I know it’s hard to see someone in distress and feel helpless.  We want to fix things, and if there’s nothing material we can do to help, it’s easy to fall into the trap of telling people to just feel differently.  But distress is like The Game: the more you try not to think about it, the more you lose.

I can’t speak for what helps other people, but when I’m in distress, what’s much more useful to me than prescriptive gratitude is having someone just be present with me and validate my experience.  Most of the time, what helps most is, “Yeah, that really does suck.  I’m sorry you’re hurting.  You don’t deserve that.  I’m here, and I care about you.  Is there anything I can do to help?”  What helps most is people remembering that I exist, even when I’m quiet–calling, stopping by, just generally letting me know that they remember me and care about me.  I don’t expect anyone to fix me, and I don’t want to put the burden of making me feel better on anyone.  I just want to feel like I’m not alone and invisible and insignificant.  I want to feel like my feelings are real and invalid and important and allowed, even when they’re not easy ones to experience or witness.  Those things, rather than being told that I should feel grateful, are what make me feel grateful.

If writing gratitude lists or reading self-help books about positive thinking helps you, great.  I’m truly glad you’ve found something that makes you happier–everyone deserves that.  But please don’t assume that that approach will work for me, and please don’t keep beating me over the head with it.  I mean, I often need suppositories and enemas to maintain my health, but you don’t see me shoving things up other people’s butts when they have GI problems just because that’s what works for me.  (Sorry, you know I had to throw a poop joke in there somewhere.)

I feel like the only way to make anyone in power notice how desperate I am and how much I need help is to die.

It won’t help me, of course; I’ll be dead.  But I keep thinking maybe it would be the tipping point so that The Powers That Be would have to notice what their lack of compassion and refusal to help is doing to poor people, disabled people, mentally ill people.  Maybe by dying, I’d finally make them notice and listen to me.  I obviously can’t accomplish anything while I’m alive, so maybe I can finally do something good by dying.  Maybe it’ll make someone listen.

But who am I kidding?  I’m not important enough for anyone in power to notice, let alone listen to.  When I die, I won’t even be a statistic.  I don’t even matter enough for that.

Rational

Everything is so dark.

I keep wishing I would die.  A car accident, a murder, my colon suddenly rupturing.  I don’t really care, as long as I don’t have to do it to myself.  Eventually, if I don’t die, I will do it to myself, once the election is over.

I wanted to live, but I can’t.

I tried, I really did.  I tried so hard for so long.  Sometimes things were better, but now there’s no hope of that happening again.

The three hotlines not answering last night was my breaking point.  I can’t try anymore.  I’m sorry.  I’m not going to survive this.  I’m mostly okay with that.  I mean, it makes me angry because I want to be able to survive.  But I’ve come to terms with the fact that I can’t, at least as much as anyone can come to terms with that.

I’m not crazy, and I don’t belong in a hospital.  Suicide is a logical response when faced with hopeless, unlivable conditions.  All the rhetoric around suicide (driven mainly by organizations funded by drug companies that get filthy rich by selling us antidepressants instead of addressing the socioeconomic and traumatic origins that underlie many cases of mental illness) says you can’t be suicidal and sane, but I am perfectly sane.  Lack of societal acceptance of a behavior doesn’t mean that those who demonstrate that behavior are insane.  Not that long ago, homosexual acts were seen as an indicator or insanity.  I’m suicidal and sane.  It’s the only real choice left to me.

We Don’t Need More Awareness

Apparently, it’s Mental Illness Awareness Week, and apparently, since I’m a crazy person, I’m supposed to care about it.  Well, I don’t.  I think it’s bullshit.

Lack of awareness is not the problem.  We all know mental illness exists.  I doubt you could find anyone in this country, in any developed nation, who doesn’t have a lived experience of mental illness or know someone who does.  Plastering banners on Facebook and wearing rubber wristbands and pointing out that 25% of us are bughouse nuts doesn’t actually help anyone.  We don’t need more awareness.

What we need is compassion.  We need people to stop treating us like we’re all axe murderers who will hack them into pieces at the slightest provocation.  We need people to stop being afraid to let us be around kids.  We need people to stop ignoring us because they don’t know what to say or how to make it better.  We need people to stop treating us like we’re intrinsically different from them.

We need to look at the epidemiology.  We need to look at the fact that people of color and poor people are more likely to be diagnosed with mental illness.  We need to look at the fact that trauma is probably the single biggest predictor of a psychiatric diagnosis.  We need to look at how being mentally ill puts us as much higher risk for being emotionally, physically, or sexually abused.

No, it’s not even that we need to look at those things–we have already established these as facts.  What we need to do is prioritize finding solutions to these problems.  Psychiatric treatment doesn’t address the underlying issues of poverty and racism that, in many cases, cause the emotional distress.  Most psychiatric treatment is still not trauma-informed; in fact, it is structured in a way that takes away all of the patient’s power and makes it even easier to abuse them.

We need more involvement in the system.  We need to remake the phrase “inmates running the asylum” into a good thing, into a working model for treatment of emotional distress.  We might not know exactly what we need in our moment of crisis, but people with lived experience know better than any guy with a white coat and a diploma on his wall.  We need professionals who will work with us, who will respect us as whole, competent people even when we don’t appear that way.  We need to hold the choice in our treatment and the power in our lives.  We need to stop being so afraid of violating boundaries that we leave people suffering all on their own.

We need a system where the patients hold as much power as the clinicians, or close to it.  It can be done; I’ve seen it work.  But it’s only available to rich people.  We need to find a way to make that available to everyone who needs it.  We need healthcare that doesn’t discriminate against people with emotional distress.  We need doctors who take our physical problems seriously instead of telling us it’s all in our heads.  We need to be listened to, heard, believed, included.

We need a system that doesn’t turn people away because they’re too sick or not sick enough.  We need a system in which the quality of care doesn’t depend on the amount you can pay for it.  We need a system that can offer people support beyond one hour of therapy a week if that’s what they need, but without threats and seclusion and removal of freedom.  We need a system that, instead of isolating us further, brings us into a community–first a community of other people experiencing emotional distress, and then into the larger community

But awareness?  No, we’ve got plenty of that.  All it does is reinforce the broken system that’s currently in place, so count me out.  I’ve got all the awareness I can stomach.  Instead, I’ll leave you with a poem.  To me it says everything I’m saying here except much more clearly, so here’s hoping you guys can understand it too.

Formaggio

The world
was whole because
it shattered. When it shattered,
then we knew what it was.

It never healed itself.
But in the deep fissures, smaller worlds appeared:
it was a good thing that human beings made them;
human beings know what they need,
better than any god.

On Huron Avenue they became
a block of stores: they became
Fishmonger, Formaggio. Whatever
they were or sold, they were
alike in their function: they were
visions of safety. Like
a resting place. The salespeople
were like parents; they appeared
to live there. On the whole,
kinder than parents.

Tributaries
feeding into a large river: I had
many lives. In the provisional world,
I stood where the fruits were,
flats of cherries, clementines,
under Hallie’s flowers.

I had many lives. Feeding
into a river, the river
feeding into a great ocean. If the self
becomes invisible has it disappeared?

I thrived. I lived
not completely alone, alone
but not completely, strangers
surging around me.

That’s what the sea is:
we exist in secret.

I had lives before this, stems
of a spray of flowers: they became
one thing, held by a ribbon at the center, a ribbon
visible under the hand. Above the hand,
the branching future, stems
ending in flowers. And the gripped fist–
that would be the self in the present.

–by Louise Gluck, from Vita Nova

Yeah, I’m an asshole

Somebody posted a comment on my blog the other days, asking me to donate to his Indiegogo campaign to help him manage his mental illness.  He needs, among other things, a car, and he wants me  to give him money, or at least repost his pleas for funding.

It makes me incredibly angry.  It’s been two days, but I can’t let it go.  Maybe getting it out of my system will help.

It would be different if this were coming from someone I knew–or someone I had ever interacted with at all.  But this is just some random person who’s never commented on my blog before; he doesn’t even appear to have a blog, just his personal Facebook page.  If it were someone I knew, I might be willing to repost, but this is some complete stranger who appears to have found me through Blog for Mental Health.  (Those of you who are also involved with that project, be on the lookout; I imagine he’s targeting more than just me.)

I think what bothers me the most is that if he’d read even a handful of my posts, he would’ve realized I’m in exactly the same goddamn situation.  In fact, mine may be worse–he gets more for disability than I do, and he appears to have subsidized housing, which I don’t.  I don’t have a car either.  I can’t rely on public transit either.  I can’t get to my doctors’ offices or the pharmacy or even the fucking grocery store.  He also has a therapist, which I don’t.

Normally, I have a lot of empathy for other people who are struggling with poverty and mental illness.  It’s a deadly combination, and god knows I understand how hard it is to survive every day when there’s no relief in sight and no one in power gives half a damn.  But I lose all compassion when someone comes into my space, making no effort whatsoever to get to know me or my situation, and wants me to help him fix his situation.

Once again, I’m made invisible.  My needs don’t matter because no one even bothers to see them.  I have fucking two dollars in my wallet and a negative balance in my bank account.  And it’s going to be the same next month.  The overdraft will empty out the few dollars I have left over after paying my $400 rent.  I need $150 for pellets for the pellet stove, and I need another $120 for the oil company.  My home internet got cut off because I couldn’t pay the bill, so I’ve been using the hotspot on my phone, but that’s probably going to cause a data overage charge even though I’m severely limiting my internet usage.  Oh, and at some point I should probably pay the overdue power bill, too, but I get $700 a month, so you do the math on that.

Every month, suicide looks like the only reasonable way to deal with all of this.

But please, keep asking you to give you money.  You definitely deserve it more than me.

Blood test for depression?

New Blood Test Diagnoses Depression
Full text of the study here

I saw this article on my Facebook feed a few days ago, and it’s been popping up in various social media fora since then.  Everybody seems excited about it, and I don’t get that reaction.  Personally, it worries me.

I’ve been wary of the biological explanation for mental illness for a long time.  No matter how many times people insist that it’s an illness just like diabetes, that doesn’t make it true.  There is some overlap, sure–it tends to be chronic, it’s invisible, and lifestyle changes can help many people manage the symptoms.  But depression, unlike diabetes, is not a purely physical disease.

This study, despite what a lot of people on Facebook think, does not prove the biological/neurochemical hypothesis of depression, nor does it provide a test to “prove” whether someone has depression or not in the way someone tests clearly positive or negative for, say, strep throat or diabetes.  In my understanding, this study says much more about the epigenetics of depression than it does about the neurochemical hypothesis.  (For purposes of disclosure, I only scanned the actual study, and I’m not a doctor or a scientist.)  Also, it’s a very small study, only 32 people.  That’s far too small to draw any major conclusions.

My worry is that people will take a study like this and use it the wrong way.  A lot of the sentiment I saw on Facebook was along the lines of, “At last, we can finally prove that most of these whiners are just faking depression for sympathy!”  Depression is a complex disease with many causes and extenuating factors, so I doubt that everyone’s experience of depression can be attributed to nine RNA markers.  What will happen to people who experience symptoms of depression but test negative?  Will they be accused of malingering or attention-seeking?  Will they be denied treatment because their depression isn’t real?  It’s already too hard to access treatment, and I can see this test being used to deny access to certain people.

My other worry is similar but more specific.  This study shows that certain people will benefit from therapy (specifically CBT, in this case) while other people won’t benefit.  Again, it all comes down to those nine RNA markers, which can’t account for someone’s motivation or willingness or desire to get better.  If someone’s labs show that they won’t benefit from therapy, will insurers be allowed to deny them access to it?  Will an RNA marker that says someone won’t benefit from CBT also be used to deny them, say, DBT or psychodynamic therapy?  After all, the insurers will say, why should they be forced to pay for treatment for people who won’t get better anyway?  We now have mental health parity laws (unless you’re on Medicare, in which case you’re only allowed to be crazy for six months in your entire life), but I can easily imagine a new system where mental health care must legally be covered just like physical health care, but only for people whose genes say they’ll benefit.  The rest will just be left to fend for themselves.

It’s not that we don’t try.

I read a blog post today written by a therapist.  I’ve been following this blog for a while, and mostly it’s decent.  But today, I just want to throw things.

This therapist is talking about how people with mental illness give up on treatment.  Apparently, according to this guy, 80% of people with depression get better after a year of therapy, but we just give up and won’t put in the effort.  He says, “Most mental health issues, for example, can be much better managed with a modicum of effort. Most people still do not put in the time.”

I don’t even know where to start with this.

First of all, where is this 80% statistic coming from?  He doesn’t cite any sources, and I don’t know if I believe it.  I know too many people who struggle with unremitting or recurring depression despite years of therapy, myself included.  I know my anecdotal experiences don’t disprove statistics, but I’m not just blindly going to accept numbers thrown around on the internet without any sources cited.

Second, how are we defining “getting better” in this statistic?  Are we using the HRSD?  BDI?  CES-D?  Goldberg?  Wakefield?  What score indicates “better”?  And over what interval of time?  For instance, counting someone as “better” 3 months after a depressive episode might be accurate then, but if they later relapse, are they still counted in the 80%?

Third, define “good counseling.”  Every single therapist I’ve ever seen claimed to be good, but some of them weren’t.  Some of them were probably good therapists for other people, but they weren’t good therapists for me.  So when I terminated therapy with them, was I giving up and refusing to put in the effort?  Was I being one of those patients?  What about the therapists who have fired me?  Who said I was too difficult, too sick, too complex?  I guess I should’ve been a better patient so they wouldn’t have given up on me.

It’s bullshit, blaming people for not being able to do therapy.  There are a million reasons why someone couldn’t.  I, for instance, am mobility-impaired, don’t have a car, and can’t access public transit easily.  I cannot easily get to a therapist’s office.  I also can’t have a therapist whose office requires me to climb more than a few stairs, which is a major barrier in the area where I live.  This is not because I’m not willing to put in the effort.  I’ve pushed myself to the brink of physical collapse to try to get therapy, but my body just can’t handle it anymore.  It’s not okay to blame me for not getting better.

I have a Deaf friend who lives in a small town.  She can’t find a therapist who is fluent in ASL, so how is she supposed to access therapy?  That’s not for lack of trying either.

Or my friend who’s working two jobs.  She can’t just take off work from her low-wage jobs to go to therapy when the therapists are working.  She works from 6:00 in the morning until 10:00 or 11:00 at night.  She wants therapy, but there’s no one near her who can accommodate her schedule.  She doesn’t get sick time, and it she asks for time off regularly, she could easily be fired.  That’s not because she’s too lazy to put in the effort in therapy.

And what about the people who do get therapy, lots of therapy, for years, who work their asses off to heal…but don’t get better?  Yes, we’re statistically a minority, but we exist.  And to say that most people with mental illnesses won’t put in the “modicum of effort” to manage their symptoms is misleading and hurtful.  Most people don’t want to suffer.  We don’t want to be miserable and alone.  Most of us are doing the best we damn well can, and most of the time we’re doing it with far too few resources and far too little support.

It’s easy to sit in the therapist chair and judge us for what you perceive to be a lack of effort.  It’s easy to say, “Why won’t you just _____?”  And I think it’s especially easy to judge of you’ve recovered–you think if you can get better, why can’t/won’t everybody else?  But it’s not that simple.  Your illness is not everyone else’s illness; your pain is not everyone else’s pain; and your solutions are not everyone else’s solutions.  You may not see progress, but that doesn’t mean we’re not trying.

So far past done with this

In the ongoing saga of My Case Manager Is Fucking Incompetent…

Today I was supposed to meet with her and my new case manager at 1:00.  At 12:15, while I was in the basement doing laundry, she called to see if we could move the meeting to 2:00.  I called back, but no one picks up.  No one ever picks up in that office, so I don’t know what the hell you’re supposed to do if you’re having a crisis or something.  So I left her a voicemail.

She didn’t show up at 2:00.  Or 2:15.  Or 2:30.  Or 3:00.  Finally I wrote it off and took a nap instead, because fuck that shit.

She doesn’t work on Fridays, so she won’t get my voicemail tomorrow and reschedule.  I’m not convinced the woman even knows how to check her voicemail, judging from past experience.  She’ll probably call me in another week and ask why I never called her back.  She won’t give me her cell phone number because OMG BOUNDARIES, and no one picks up at the office.  So how the fuck am I supposed to get in touch with her?

I’m so sick of this bullshit.  This is supposed to be helpful?  I was bullied/threatened into getting services from DMH–I didn’t want to deal with them after the way they’d treated me when I was trying to apply for services.  But it was get services from DMH or go to the hospital.  But this shit doesn’t even qualify as services.  I see ICM maybe twice a month.  She doesn’t check voicemails or return phone calls.  She goes on vacation without telling me.  When she does actually contact me, she constantly changes appointment times, and she almost always shows up late for appointments and then laughs it off.  She insists my diagnosis is something other than what it actually is, and she has virtually no education on my diagnosis.  I’m not convinced she has education on much of anything; she doesn’t even have an associate’s degree, and I know much more about the DSM than she does.  She has no understanding of what it’s like to live in poverty.  She has no idea what it’s like to live with a severe, disabling, chronic illness.  She isn’t interested in learning what my life is like. 

Pretty much all she does is show up sporadically to take me grocery shopping.  And while I go grocery shopping, she goes clothes shopping, and I have to sit outside with my melting groceries and wait for her to show back up.  I have no crisis support.  She’s not helping me manage any of my problems.  She’s not helping connect me with resources in the community.  She’s not doing fucking anything to help me.  She doesn’t even ask how I’m doing beyond the cursory, “Hey, how’s it going?” when I first see her.  She has no idea that my depression is getting worse because she doesn’t fucking ask, and I’m not gonna blurt it out in the middle of fucking Whole Foods.

I think what really bothers me is I feel like no one there gives a fuck about me.  If I killed myself, they wouldn’t even realize for a month.  (Don’t worry, I’m not going to kill myself.)  No one would, really.  I don’t have friends anymore.  My roommates might notice once I started to smell, but that’s it.  There’s no one left in real life who gives a fuck about me.  That’s a really painful thing to realize.

Happy Dance Time (or something)

Idiot Case Manager is leaving the program I’m in!  I won’t have to deal with her for a whole lot longer!

It was really hard not to act excited when she told me.  Really hard.  It was even harder because she seemed to think I’d be upset about it, and that made it hard not to start laughing.

Then she basically tried to push me out of the program, which is fucked up on a number of levels.  I know I seem high-functioning, but the last few weeks, my life has been falling apart more and more.  I really need support right now, not that I’ve been getting that from ICM.  She doesn’t even ask about my life, beyond, “Hi, how are you?”  She’s done nothing to gain my trust, so of course I just tell her I’m fine.

I really hope I get someone better when she leaves.  I need someone who actually knows what they’re doing and is actually going to try to help.  I really, really need someone right now.