Wednesday, October 14, 2015

Tell Me Who's Crazy...

By Jen Constantine

One View: 
“As it turns out, it’s just plain expensive for taxpayers to care for the small number of people with serious mental illnesses who refuse treatment and therefore end up homeless, incarcerated or draining the public coffers with multiple interventions and hospitalizations. At the same time, new psychiatric medications and methods have made it possible for people to get well without becoming long-term inpatients in the first place.”

–Time Magazine “Should Mentally Ill People Be Forced Into Treatment?” by Haley Sweetland Edwards

Thinking aloud for a paragraph, bear with me: Why would any sane person refuse treatment?  A cancer patient wouldn’t refuse chemotherapy.  Oh, wait.  Sometimes people with cancer do refuse treatment when they decide the torture of the treatment (risk) isn’t worth the possibility that life might be extended (benefit), especially if full recovery is unlikely and the quality of life that the person has in their remaining time is likely to be drastically reduced.  That’s a perfectly rational conclusion that people facing end stage cancer make every day.

And now for something that may seem entirely different, please bear with...

I am a mental patient who escaped by “refusing” treatment.  A piece of my story: Even as a kid, I had been diagnosed and ostracized by humans around me because of my strangeness. As a young adult I struggled deeply.  I was alone, scared by frightening worlds, in and out of many realities, unable to connect with people, I didn’t feel human, I talked to aliens and otherworldly beings.  I gave up, so lost in myself that I don’t exactly know how I landed in the adult psychiatric ward the first time. 

In the psych hospital I learned I was diseased, which was great at first, because things seemed to make sense.  Even though I couldn’t think clearly or feel much on the dope the hospital supplied, I learned that my brain was broken.  That’s why I never fit!  I met loads of other people who didn’t fit either, on various levels of dope and learned about how this amazing book could reduce our humanity to sets of symptoms, and the dope the hospital, and later the community mental health center, supplied could fix our symptoms.  I learned that I would never be able to hold a job, have a family, or finish college.  But none of that mattered.  The dope kept me from feeling too deeply, and I learned that the dope would sling freely as the only real requirement of my treatment, that I would be given money for food, housing, and living expenses when I wasn’t in the state hospital.  The drug companies would sling me the drugs for free even when my insurance wouldn’t cover them.  The staff of the mental health center would fill out the paperwork, all I had to do was sign with a shaky doped up hand on the dotted line.  They filled out all the paperwork: disability, food stamps, Medicare, and housing assistance, anything else they thought I needed.

Somewhere along the line, with all the free dope and people doing all these things for me, I learned I was too broken and I couldn’t be trusted to do things for myself.  The dope broke me so bad I couldn’t focus to read more than a sentence or two.  I learned this was just more symptoms of my more diseased brain, I took more dope and lots of different kinds of dope, prescribed on site, until I didn’t care anymore.  That’s a place I have seen a lot of people stay. 

I didn’t get out of it because I’m special or I have something other people don’t.  I got out of it because the conditions along the way allowed, and a lot of people supported me, and still do support me, in just the right ways to escape.  I hear things like, “you’re not like my client” and “I wish I could have as easy a time as you” a lot.  That first one just pisses me off, the second one both pisses me off and breaks my heart.  Many of my peers new to the idea of recovery assume I somehow have an easy time of things now, that my holding my shit together when I need to (most of the time) is some kind of luck or easy for me.  Providers don’t see me as their client because I’m not a doped up, ballooned out, shuffling patient anymore.

Here’s where I am inclined to say something gentle about mental health providers.  Most of those I’ve known are not intentionally damaging.  Most have really good intentions, many know someone close to them who struggled deeply with big problems that were diagnosed mental illness, and many professionals have had some level of difficulty with trauma and healing.  They go into the “helping professions” because they generally want to help.  They invest a lot of money, time, and resources in education that is supposed to prepare them to be qualified to help people in the ways they seek.  They care deeply.

I know many family members who consider themselves advocates for diagnosed adults who fall into similar categories and often feel intensely the desire to help what they see as the hopeless loved ones in their life.  I honor the intentions of all who seek to aid in the suffering of those diagnosed, whether through choice of profession or choice of volunteering in advocacy efforts.

Opening one's heart to the idea that the best intention to help invested in so fully may have prolonged the suffering of those same people is certainly an intensely painful and difficult reality for anyone to face, much less someone so wholly intending to make a life out of doing the right thing.

So what’s the alternative to facing this reality?  The alternative is clearly illustrated in dozens of articles like the one quoted at the beginning of this piece, thinly veiled in the scrutiny of those pesky individuals labelled as mentally ill & non-compliant.  These articles, and the viewpoint of the larger population they represent, point clearly to the effectiveness of diverting our attention in order to turn a blind eye to the uncomfortable truth-that what we have done in order to help, as a society, is not helping.  What we have done is, in many cases, making things worse.  As a society we are fully invested in the idea that mental illness is the root cause of many of our social problems; that if we could identify, isolate, and treat these people, then many of our social problems will just fade away.

So what’s the problem with rolling with this idea?  It feels better to know that there’s a simple solution, and that the fault for the problem lies with “those people” who just stubbornly refuse to accept treatment.  To answer the question to what the problem is, we have to ask ourselves another set of questions, questions that are carefully avoided in mass media, questions I’m going to ask right now

Let’s say we catch more of these people and force or coerce them into services they don’t want.  Where do they go from there?  If force is required, they enter the public mental health system.  The truth is, most people forced into the public mental health system never get back out.  If they do, it’s because they are forced back out for non-compliance, not because they regained a full life.    So, what happens when we use “prevention” to force more people into an already overburdened system?  My first thought is there aren’t enough providers in the world to handle that.  We already throw billions into the public system, even though it rarely results in people getting back out healthier than they were when they went in.

Here’s another really good question.  Why don’t people want the so called help being offered, voluntarily?  If you’ll hold off on the blinders for just a bit longer, I think I can explain this pretty well.  As a public, we’re just supposed to believe these people lack insight into their illness, and if they just knew how much treatment would help, surely they’d volunteer.  If we haven’t been forced, or even voluntarily entered into treatment, it’s just some inordinate thing.  

What really happens in a psych hospital or a community “mental health” center are things you might not expect.  I’ll use a person who is having serious thoughts of suicide as a starter example.  We are taught, as the public, that treatment is the best option, and getting that person into treatment is an imperative.  Here’s what actually happens in most cases once a person is turned over to authorities for “help, try to put yourself in the place of the person receiving this help:

First, they strip all clothes and possessions.  Music player helps soothe you?  Friends on Facebook?  The comfy clothes you wear to soothe your depression?  They take it all.  You can begin to earn your things back, if you comply with the “treatment” and start showing progress.  Before you can get any privileges, though, you need to see the doctor.  If you’re unlucky enough for it to be a Friday, it’s going to be awhile.  Feeling less suicidal yet?

You also can’t have any caffeine, can’t phone a friend or family member, and can’t sleep very easily.  Oh, I didn’t mention your low rank on the privilege scale means someone will be checking on you at least every 15 minutes, with a flashlight if you’re trying to get some sleep at night.  All these lovely “helps” are available, voluntarily or involuntarily, through your local psychiatric ward.  

You came in voluntarily and now you want to leave?  That’s not how this works.  The difference between voluntary and involuntary is who pays the bill.  Feeling less suicidal now?  You’re not getting out until we are satisfied that you agree how wonderful your life is, and how foolish your suicidal feelings were.  Either you enjoy being disconnected from anything and anyone that helps you feel human, or you find a way to lie your ass off.

This process works similarly for other illness labels as well.  Let’s switch over to the case of someone like me, labelled with schizophrenia (among others).  I generally wake up having no idea how I ended up in hospital.  No one will answer my questions as to why I’m locked up, I don’t get to go to groups like people who come in suicidal or due to substance use.  I’m there for “med management”.  Which means I can color or play spades between the times I’m being given my “meds”.  

That’s as long as I’m compliant and I’m on the good side of the ward.  If I screw up and freak out when I come to in a strange place, in strange clothes, with strange people who won’t let me leave…well then, I’m going to be on the locked side where there is only sit in your cell and wait for meds and food with nothing at all to do.  

Do either of these sound “therapeutic” for someone who is experiencing intense fear of strangers and problems staying in “consensus” reality?  Keep in mind, I’ve also had my clothes removed along with my music player, my phone, and anything else that I normally use to connect and orient myself within consensus reality.  And I can’t smoke.  That really sucks because I’ve never found anything better than smoking to reconnect me with the world everyone insists is always around me, again with this “consensus reality” theory.

Now, I’m going to ask the very same question again.  Why don’t people want the so called help being offered, voluntarily?  Did your answer change?

Here’s another question.  Why are rates for recovery of a full life after psychosis so much higher (86%) in countries where there is extremely limited access to mental health services and where psychiatric medication is much less often prescribed? (World Health Organization in 2 long term studies).  Shouldn’t a developed country like the US, with all our advanced resources, have superior outcomes to an “underdeveloped” country like Nigeria?  What are third world countries doing that we can’t?

Now that’s just a way too loaded a question to answer in the same piece.  So I’ll leave you with just a bit until next time:

The truth is, we do know some things about what works to assist people in moving through severe emotional crisis, and even psychosis, and on with their lives.  Ways of doing this don’t come as naturally now that we’ve learned to fear these experiences and push people off into professional services if we think they might be having them.  The real trouble is that when we ask: “How do we get people to seek & accept the treatment?”,  we are asking the wrong question.  We should be asking “How do we find ways to assist people in ways they actually WANT to seek and WILLINGLY accept?”  

The answer to that is pretty simple.  ASK US.  Many of us who have found healing and/or recovery of a full life are doing some great work toward progress for all citizens, albeit largely unknown to the general public.

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