The Lived Experience of Ostracism

h/t whatnot

I first discovered C. Fred Alford’s work about the experiences of whistle blowers. In it, he describes what constitutes “knowledge as disaster”, and my experiences jibes almost perfectly with this list:

“What must the whistle-blower forsake in order to hear his own story?

* That the individual matters.

* That law and justice can be relied upon.

* That the purpose of law is to remove the caprice of powerful individuals.

* That ours is a government of laws, not men.

* That the individual will not be sacrificed for the sake of the group.

* That loyalty is not equivalent to the heard (sic) instinct.

* That one’s friends will remain loyal even if one’s colleagues do not.

* That the organization is not fundamentally immoral.

* That it makes sense to stand up and do the right thing. (Take this literally: that it “makes sense” means that it is a comprehensible activity.)

* That someone, somewhere who is in charge knows, cares, and will do the right thing.

* That the truth matters, and someone will want to know it.

* That if one is right and persistent, things will turn out all right in the end.

* That even if they do not, other people will know and understand.

* That the family is a haven in a heartless world. Spouses and children will not abandon you in your hour of need.

* That the individual can know the truth about all this and not become merely cynical, cynical unto death.

Not only is it hard to come to come to terms with these truths, but when one finally does, it seems one is left with nothing.”

Now plug in this list to Smart’s diagram below.

Multimotive model of reactions to interpersonal rejection experiences.Smart Richman, L., & Leary, M. (2009). Reactions to discrimination, stigmatization, ostracism, and other forms of interpersonal rejection: A multimotive model. Psychological Review, 116 (2), 365-383 DOI: 10.1037/a0015250

That, in a nutshell, is my experience. Ostracism is a cruel death sentence where all of the means to sustain oneself are intentionally withheld. The victim is used as an object of ridicule, contempt and alienation. The dying is slow, and there is full self awareness of what’s happening. Think of open heart surgery being performed without end, night and day without anesthesia, where the surgical team continually ignores the cries for help and instead makes jokes about the patient and his plight.

That is ostracism. Alford describes whistle-blowers who are doomed, but somehow, he never connects their experiences to ostracism. He discusses living as though one is already dead. Yup, that’s ostracism, because in the eyes of those who know and those who commit it, the victim as person has been murdered and only a ghost remains. But because the ghost has a heartbeat and is still enfleshed, it’s an object used for entertainment. In this case it’s used to create a feeling of superiority and legitimacy by degrading the victim as an unworthy, repulsive “other”.

I have been an other for time out of time. There is no re-entering society. I have been a most compliant patient patient and have repeatedly tried and failed to find a job, volunteer, make a friend beyond the most superficial of acquaintance level, and find any meaning or purpose in continuing to exist this way and there is none. In writing about some of my experience, I attracted a cyber stalker nurse and her band of bullying nurses, ambulance drivers and a Texas ER doc who wrote that “if she’s still alive we can make fun of her”. I was diagnosed as having persecutory delusions because my story “reads like a novel.” The outpatient psychiatrist to whom my case was assigned – she sure as hell didn’t volunteer – is married to the CEO of a competing organization in which I had been an inadvertent whistle-blower. In that organization, the mid level manager and director paranoia ran on high octane, and ironically, I wasn’t paranoid enough to save myself.

The paranoid whistle-blower is absolutely fight (sic) that his organization is not just out to fire him, but to obliterate him or her. The whistle-blower’s paranoia is an accurate emotional reading of an emotional reality: the one who has become the scapegoat cannot just be dismissed, but must be destroyed, so that others will know.

It is this aspect of paranoia that is the most difficult of all for an outsider to come to terms with because it represents a truth that is hard to know: that if the organization feels sufficiently threatened by the individual, it will remove him or her. Not just beyond the margins of the organization, but all the way to the margins of society. The average whistle-blower of my experience is a 55-year-old nuclear engineer working behind the counter at Radio Shack.

I was so desperate for help that I eventually sought it from the mental health non-system system, knowing full well that I would be placing myself in the hands of providers who were as likely to treat me with contempt as those who ostracized me did. All of my concerns were validated. For my troubles, I was diagnosed with stigmatizing labels, received treatment which resulted in metabolic, immune and cardiac derangements, was repeatedly deceived, humiliated, degraded and dehumanized, and was coerced and threatened. Physical problems were not diagnosed and treated, but instead were recorded as being somatizations and dismissed, if they were acknowledged at all. I cannot expect to receive competent healthcare from any provider who accesses my medical record because I am permanently and prominently labeled as the “xx year old homeless patient with extensive psych history”. When I pointed out multiple examples in the medical record of that to the outpatient psychiatrist, she sent a note to some of the offenders very politely requesting them not to do that anymore, and she proudly relayed that to me. But still it continued, and having been on the provider side, I know damn well that once patients are labeled, that they are treated with contempt, do not receive even minimally acceptable care, and they suffer for it with higher morbidity and mortality rates.

I took myself off every prescribed medication as none had helped, some were prescribed to mitigate the adverse effects of others, and many had caused direct harm. I read my medical record, identified what lab and diagnostic values were abnormal, and then I did all of the self care activities that I could do with my resources to reverse the damage.

But ostracism can’t be treated with medications and meditation. It requires a real physical friend, a network of professional/work peers, and a place in the social order. None of those are available to me.

Stillman, et al, describe life without meaning and purpose:

Why should social exclusion reduce the sense of life as meaningful? The pervasive reliance on social connection as humankind’s biological strategy entails that people are deeply motivated to connect with other people as a fundamental aspect of nearly all human striving. Meaning itself is acquired socially. Hence to be cut off from others is potentially to raise the threat of losing access to all socially mediated meanings, purposes, and values.

The formation and maintenance of positive close relationships can aptly be characterized as one of the primary motivations for human beings (Buss, 1990; Maslow, 1968). This pervasive drive has been described as the need to belong (Baumeister & Leary, 1995). We define social exclusion as a perceived deficit in belongingness.

Oh, belongingness. Joiner has something to say about that:

The theory posits that serious suicidal behavior will not occur unless an individual has both the desire to commit suicide and the ability to do so. Two factors contribute to an individual’s desire for suicide, a thwarted sense of belongingness and a sense of perceived burdensomeness on others, while the ability to commit suicide can be acquired over time through habituation to the physical and mental pain involved in self-injury.

I have been cut off from a place in society. The mental image I have is the astronaut in 2001 whose oxygen line has been snipped by HAL, the malign robot. At least the astronaut suffocates quickly in the absolute freezing void of space. His awareness of his predicament is full, but brief.

Not so the ostracized, who have to find their way in a hostile wilderness which is incompatible with life. I am out of place everywhere. There is no place to escape to. There is no respite.

In my everyday world, I go places to kill time. To use up the eternal isolation. To go just for the sake of movement. There is no reason for a journey. There is no destination. I try to keep everything out of focus, like looking sideways out a car window, because any conscious realization of my plight is too excruciating to bear, even for a moment. Time has no meaning. There are no holidays, anniversaries, birthdays, wedding, births, deaths, or special events by which to measure life. There is no quality of life. Everything adds up to zero. It is exhausting purposeless, meaningless, hamster wheel work, which is unending.

The psychiatrist conflated psychological assessment with treatment (not just her – I have found this with all mental health providers across disciplines), and I find this in the literature, as well. Assessment of depression, chronic severe insomnia and suicidal ideation is intrusive and painful, and yet, that is the extent of what she did at each visit. I had nothing else to share. My story was invalidated by diagnosing it as delusional. I will not refer to it again. It is not able to be heard by anyone. And I don’t want to cause anyone distress, which this obviously does.

It reminds me of times when people who knew what was happening to me would turn away when they saw me, lest they be seen with me and thus perceived as being at risk for ostracism themselves. There’s nothing like having people literally run from you to bring home how your life is destroyed.

She asked me what I was reading, but I’d reported to her my increasingly and consistently poor ability to comprehend, let alone, remember what I’ve read. I no longer read anything longer than a headline. Culling the literature for this blog post is taking me an extraordinarily long time. It probably reads as disjointed and not terribly well-reasoned. My cognitive ability and memory stink, to use the technical term. Yet, I can’t distinguish whether my nonstop efforts to keep everything out of focus, and so to minimize the consciousness of my predicament is the cause of my ever worsening cognition or just an effect of ongoing isolation.

Except for the visits to the psychiatrist, I have not had a single substantive conversation with another person for many years. And I wouldn’t really call the content of the visits conversation. In reality, I was always on tenterhooks trying to not evince distress, lest she decide to forcibly treat me.

I’ve lost the ability to have a social conversation. I can’t relate to others because I have no social commonalities – no family experiences, no contacts with people considered friends, no work role, no social role – nothing on which to any longer identify with others. When I was still trying to regain involvement via volunteering, as soon as someone got a whiff of my isolation via lack of those connections, they would abruptly cut off the conversation. I never heard from any of them again. The psychiatrist had been told this repeatedly when she poked and prodded into why I no longer sought outside activities. That amounted to self punishment. It’s painful to be rebuffed and excluded over and over and over. I am a slow learner, but I finally got the lesson: in order to avoid inflicting pain on myself, do not try to go where you are not welcome. That would be everywhere.

But she did it herself. She’s in a position in which, if she were to go out of role, granted, she could have provided me networking referrals to jobs.

But of course, she didn’t. Boundaries, you know. I was an assigned case, a cluster of pathological symptoms. Not a person, not someone with advanced education and related professional experience, not even a plain old person. She made two specific suggestions about how she saw me being able to contribute: to serve as a personal care attendant (adult baby sitter and butt wiper) or as a pet sitter. As if that wasn’t confirmation of my deemed worthlessness. Early on I had given her a copy of my vitae, and to her credit, she read what I had offered to her via a sample of my writing and the Alford article referenced here. And I don’t believe that she conducted therapy as a rule. I’m pretty sure I was an exception and guess that she primarily practiced psychopharmacology along with her administrative duties.

In my medical record, it turns out that her sole treatment goal for me was to keep me “in the realm of suicidal ideation. Dx: existential despair, but no worse than usual.” And that was the most positive thing written in my entire medical record. How is that compatible with life?

Stupid me. If I had gotten my records earlier, I could have saved myself the repeated distress of being “clinically assessed” (read psychologically debrided without anesthesia with wounds left gaping) and left to try to forget until the next session of torture and tell.

In my world, no one returns phone calls and emails. I received a total of 6 pieces of US mail last year (not addressed to “or resident”) – all from organizations requiring paperwork and none from individuals or anyone who knows me personally. I used to keep NPR on to hear reasonable, non-violent human voices. But I finally stopped because I often couldn’t follow the patter and it became just more intrusive and irritating noise. Now I just keep a fan running to drown out gunshot season – any loud abrupt noise especially during open window weather. I exist in a noisy world but with more silence than a monastery.

I can’t get any enjoyment out of any experience. Food tastes like nothing. Everything is a tone of grey and shadow. Aromas that in the past evoked pleasant memories are undetectable, and most aromas smell foul. Music is just notes, too loud and evoking nothing. People are nothing but harbingers of pain and dread. No one has voluntarily touched me except to perform medical procedures using my body as just an object, such as blood drawing and injecting a joint, in many years. I know better than to reach out a hand or to offer a pat on the shoulder. It would most decidedly not be welcomed.

There is no reason to prolong this, but my attempts at providing my own euthanasia failed. The LD50’s weren’t enough, and I don’t have the means to provide myself with a peaceful and painless death. I’ve come to realize that a painful death is preferable to this unending dying.

Ostracism means that there is no burden to anyone. Society has already unburdened itself of me.

Ostracism is a death sentence, and every person who knows that it’s been imposed on someone and yet who does not intervene, is a member of that judge and jury.

I can’t stand the notion that the rest of my natural lifespan is going to be spent in this wholly silent, totally isolated and destitute way of existing. It’s enforced insanity. The conditions explain why most whistle blowers get sick and die early.

ResearchBlogging.org

Alford, C. Fred (2007). Whistle-blower narratives: the experience of choiceless choice Social Science, Volume 74 (1), 223-248

Smart Richman, L., & Leary, M. (2009). Reactions to discrimination, stigmatization, ostracism, and other forms of interpersonal rejection: A multimotive model. Psychological Review, 116 (2), 365-383 DOI: 10.1037/a0015250

Stillman, T., Baumeister, R., Lambert, N., Crescioni, A., DeWall, C., & Fincham, F. (2009). Alone and without purpose: Life loses meaning following social exclusion Journal of Experimental Social Psychology, 45 (4), 686-694 DOI: 10.1016/j.jesp.2009.03.007

Van Orden, K., Merrill, K., & Joiner Jr., T. (2005). Interpersonal-Psychological Precursors to Suicidal Behavior: A Theory of Attempted and Completed Suicide Current Psychiatry Reviews, 1 (2), 187-196 DOI: 10.2174/1573400054065541

Williams, Kipling D (2001). Ostracism: The Power of Silence 2001 Other: 1572306890

That’s all, folks

I’ve scoured the interwebs and continue to come up empty.  Suffice to say that the US is a predatory, brutal place with a societal culture that promotes predation.  As someone who was committed to patient advocacy, and yet failing miserably when I needed and sought help, I don’t want to lead others on a wild goose chase predicated on false hope and foolish optimism.  Those lead to betrayal, failure and more suffering.

That, in all of this medical mecca town, not a single psychiatrist, psychologist, psychiatric social worker or academic program offers any effective care and treatment to reduce unbearable psychological distress, nor is interested in doing so, speaks for itself.

That no one is interested on this blog or any other in discussing approaches or treatment alternatives sends a clear message.

Only I can find a place on the interwebs where no one else resides and Google turns up no results. WordPress putting all of my blog posts and comments on other WP blogs into spam was also a large factor in stopping.

In how many ways can one be ostracized?  I’ve lost count.  But I also just don’t give a damn anymore. They’ve got me where they want me – disappeared so as not to ugly up the place.

For the all one person (annalaw, that would be you) who read and commented, I am very grateful and appreciative.  I wish you the best in your quest for minimally acceptable care.

The reading list will remain in its messy, disorganized place.

And I will remain in this living hell until I can get myself euthanized and catch up to the social death.

Dogs that do not bark: ostracism, psychache and suicidality

The Way Out, or Suicidal Ideation: George Grie...

The Way Out, or Suicidal Ideation: George Grie, 2007. (Photo credit: Wikipedia)

1 boring old man referenced this historical and alarming analysis on the evolution of melancholia to major depressive disorder.  Science?  Evidence?  Fuggediboudit.

MDD, the most influential diagnosis of the past 30 years, emerged from intraprofessional pressures and the ability of research-oriented psychiatrists to gain dominance within the profession. Most importantly, psychiatry needed a credible classificatory scheme to maintain its legitimacy in both the broader medical profession and the culture at large. As prominent depression specialist Gerald Klerman (1984:539) succinctly summarized: “The decision of the APA first to develop DSM-III and then to promulgate its use represents a significant reaffirmation on the part of American psychiatry to its medical identity and to its commitment to scientific medicine.” Medical legitimacy required easily measurable and reliable diagnoses. The diagnostic criteria grounded in the Feighner measure that emerged in the DSM-III to resolve the many unsettled diagnostic controversies—and that have remained mostly unchanged until the present—did produce a far more reliable system of measurement than the amorphous criteria they replaced. Yet, this particular diagnostic system was not tested against the many alternative classifications that were available during the 1970s that might have been as good or even superior to the Feighner criteria. Instead, their adoption resulted from the shared commitment to a view of psychiatric diagnoses and the path that the psychiatric profession should follow among the research-oriented psychiatrists who controlled the development of the DSM-III classifications.

The developers of the MDD diagnosis did not foresee the profound consequences it would have. They inadvertently developed criteria that encompassed what had previously been viewed as a number of distinct types of depressive conditions. Endogenous, exogenous, and neurotic forms of depression could all meet the expansive criteria of the MDD diagnosis. Moreover, because it could incorporate short-lived responses to stressful conditions, MDD was the most suitable label for many of the heterogeneous and diffuse complaints that many primary medical care patients present. Likewise, depression became the most prevalent form of mental illness measured in epidemiological studies because so many community members suffer from common symptoms such as sadness, sleep and appetite difficulties, and fatigue that need only last for a two-week period to be considered disordered (Kessler et al. 2005). The sweeping qualities of the diagnosis also made it the most attractive target for the vastly popular SSRI medications that came on the market a few years after the publication of the DSM-III. Primarily through pharmaceutical advertisements, ubiquitous messages associated the most common forms of distress with major depression. This condition became psychiatry’s most marketable diagnosis, driving mental health treatment, research, and policy. Ultimately, the Age of Depression that has engulfed the United States and much of the Western world since 1980 resulted from relatively esoteric changes in diagnostic criteria.

It’s all about c.v. building by a chief resident of a backwater psychiatry program.

Then there’s this – relational ostracism – an unwanted enforced state of thwarted belonging.  It can take many forms, and its effects are severe, persistent and devastating.

The impact of stranger-ostracism is strong and painful,and has been shown to lead to aversive psychological responses (i.e., a threat to four primary human needs—belonging, control, self-esteem, and meaningful existence; see Williams, 2001), and a rangeof detrimental behavioral responses such as social susceptibility (e.g., Maner, et al., Carter-Sowell & Williams, 2007), inappropriate mate choice (e.g., Winten et al., 2006), risk-taking behavior (e.g. Daleet al., 2006), and anti-social behavior (e.g., Warburton, Williams, & Cairns, 2006).Despite the prevalence of ostracism in interpersonal relationships, ostracism research to date has not systematically investigated relational ostracism (i.e., the silent treatment, or ostracism carried out by one partner on another).

What’s missing in both of the above?  Their relationship to suicidality and psychache.

There is such a dearth of literature about ostracism – and virtually none about clinical intervention, treatment and support for people who are targets – that it isn’t surprising to find it absent.

But Kipling Williams, Thomas Joiner and C Fred Alford’s work can form a pillar by which to build a clinical and research model to aggressively address unbearable psychache, develop strategies (which may include public health and social justice policy and programming) to minimize and remove ostracism in all of its ugly forms, and to reformulate how suicidality is assessed and addressed.

The highest priority items for me would be to deep six “suicide assessment” in favor of distressors as described by Joiner’s three domains of perceived burdensomeness, thwarted belongingness and the capacity/rehearsal to tolerate self-inflicted death.

The second is to couple all assessment with immediate and adequate distress reduction which does not entail threats of or actual involuntary confinement, intrusive observation, forced medication, any type of restraint or anything other than active multi-sensory comfort, safety and mutually deemed appropriate and acceptable interventions, resources and supports.

One more thing that is never addressed in relation to psychache:  the extraordinary amount of physical and psychological energy toll it takes.  The relational ostracism study illustrates that for many, being a target is permanent as long as the “source” is present.

When one is powerless to escape ostracism, has no ability to affect a preferred future, and is effectively trapped, suicide becomes more salient as an alternative to put a permanent ending on an intolerable condition.

Here I discovered a study about people with severe/terminal illnesses who wish to hasten death – WTHD. Of course it doesn’t include people with psychiatric diagnoses (those people are nuts, donchaknow), but it fits right in with Joiner’s theory:

WTHD as a way of ending suffering

Among participants in the studies included, the WTHD also emerged as a way out, and in some cases [45][69] as the only way of ending their physical and psychological suffering. Death was not considered as an aim in itself, but rather as an escape. Indeed, the idea of putting an end to their life brought a sense of relief to some patients.

In the study by Schroepfer [71] the WTHD was regarded as a way out or as a means of relieving loneliness, fear, dependence, a lack of hope and the feeling that life was no longer enjoyable. The study by Nissim et al.[69] suggested that in the face of oppression and despair, death could be seen as the only alternative, with the WTHD being the essence of a plan to relieve suffering. Similarly, Lavery et al. [45] reported that the WTHD was seen by participants as a means of limiting disintegration and loss of self.

In five of the studies reviewed [14][46][69][70][71] the participants also described the WTHD as a way of reducing the suffering being caused to family and carers. Coyle and Sculco [14] interpret this as a gesture of altruism, since the WTHD is motivated by a desire to relieve the family of the burden of care and of witnessing their relative’s progressive deterioration. However, although the WTHD was driven by such a motive in some patients [71], in others (or simultaneously in the former patients) the desire to cause no more pain to their relatives led them to precisely the opposite conclusion, i.e. they repressed the WTHD. As such, their wish to protect their family took precedence over their own wish to hasten death [71].

And so we circle around to Alford’s “knowledge as disaster” concepts. See the About page for a listing.

Until the key elements of this circl(ing the drain) are interrupted permanently and predictably, suicidality will go on unabated, unaddressed and just as vicious.

The strangest part?  Psychiatry, with all of its disorders, doesn’t ever mention suicidality, psychache, thwarted belongingness, perceived burdensomeness and rehearsed capacity for self-inflicted death.

But suicide is on the Diagnosis and Statistical Manual of Mental Disorders (DSM5) radar – and of course, its proposed listing as suicide behavior disorder is nonsensical and is made up à la the Mad Hatter.

Poverty of Thought

Steve Balt wrote a post about some of his take-away thoughts from the American Psychiatric Association conference.

Commenters responded with thoughtful, illuminating insights about the gestalt of extant American psychiatry.  I was gratified to read that David Healy‘s Pharmageddon book is being cited as important.  He emphasized understanding the history of how capitalistic forces have emerged as the predominant force in shaping psychiatry and in shaping policies and practices which directly affect patient treatment (I refuse to use the word, care, relative to psychiatry and mental illness treatment, because it has specific meaning in the helping professions, and it is absent here.) and patient outcomes.

Steve’s post and your response, along with Emily Deans’ highlights a type of “poverty of thought” rampant in organized psychiatry. One cannot successfully treat people without the people. The old adage, “the surgery was successful but the patient died,” is apt for this field, too.

From assessment – how do you know you’re asking the right, germane, and appropriate questions? (glaring example: asking patients about suicide plans instead of about intolerable psychache and unbearable distressors. The first results in patients’ loss of civil rights and incarceration/observation, etc., the second SHOULD result in an urgent/emergent treatment intervention to lower the levels of immediate distress and to devise a treatment plan to reduce/eliminate the causative distressors. But that would mean knowing the patient, his living conditions and intervening where social justice is required. Ew. Messy. Takes longer than writing a prescription.)

To patient relationships – currently based on legal coercion, deception, and adverserial threat

To treatment – psychotropic medication, invasive surgery, inducing seizures and electrical stimulation, plus a dollop of who-knows-what talk therapy

To outcome goals – treatment adherence (do patients name their goals of being that of treatment adherence? /derisive snorting) which are unrelated to patients’ perceptions and functions in quality of life

Everything. Everything is oriented toward the psychiatrist. These are psychiatrists‘ interests at work. Patients are simply objects upon which to act, and are the means toward psychiatrists’ rewards: professional reimbursement, the source of research funds, the means to publication, and fodder for career recognition and success.

It’s Alice down the rabbit hole or through the looking glass.

It’s wrong.

But that it’s making more psychiatrists increasingly uneasy and uncomfortable is a good thing.  Eventually, that uneasiness will increase until it becomes an unbearable, distressing force, and action will become inevitable, if not impulsive. (Yes, I’m making a sarcastic swipe at extant suicide risk assessment, but I’m not going to advocate for incarcerating the poor psychiatric victims – in this case, the psychiatrists.  Maybe a little cognitive behavioral therapy so that they can recognize their distorted thoughts, and a round of ECT to jolt them out of their depression about their situation…)

Controlling healthcare costs

Despite trying to engage in distractions and diversions during every waking moment and engaging in supposedly cognitive and memory stimulating reading (I can’t concentrate, can’t comprehend and can’t retain much info, so consider everything I write with a healthy dose of skepticism), I am increasingly experiencing noticeable memory lapses and episodes of confusion.  The memory lapses are annoying and disheartening.  The confusion is frightening.  Because no one was interested in learning about those problems and instantly dismissed them as “due to the depression”, I am left to my own devices to manage them. Enter Google.  There are self-assessment tools which purport to distinguish between dementia and depression in memory loss.  I tried them out and came away with a 100% alignment with depression.  However, these tools, and the physician feedback I received, conflated correlation with causation.  The real answer is that no one knows. After a winter of experiencing much more back and joint pain, the inability to self-plan and perform even a basic yoga practice, and a months long stretch of not leaving the bed except for bodily functions needs, I find myself so fatigued, dull, and slow that forcing myself to stay alert, attentive and mobile is a monumental task.  And really, since I do not have any obligations to work, socialize or contribute in any way, no one cares or is affected, which brings me a perverse sense of relief of not failing anyone.  When all of society yanks those away and sends you off to a life of dying and social death, this apparently is the benefit. (For all of you psychiatrists who found your “EBM” on that most medically scientific principle of false hope and optimism serving as a default component of “insight”, this is it for optimism and flexible thinking.  Insight I’ve got in spades.) I have struggled to attend scheduled volunteer activities.  But I think I am bringing a poor benefit/risk ratio to the organization.  I can’t perform much of the physical work, and sometimes I can’t remember the very simple instructions to carry it out. The people I’ve met are seriously smart, wise, witty, knowledgeable and committed to the goals and work.  The leaders lead well (coming from me, that’s the equivalent of the Nobel Peace Prize).  Two of these people are dealing with immediate end of life issues, and I try to be a reliable and comforting presence.  That, at least, I can offer and carry out. So back to self management.  I started looking around again for resources and strategies to try.  Because I root around in PubMed, am located in a city where a vast amount of clinical research is occurring, and have a sense of what I need in the way of outcomes, I called the HMO and asked to speak with the mental health case manager.  The marketing and sales people weren’t happy with that.  The person I spoke with was sullen and only after repeated requests and my refusal to give her clinical info was I transferred.  And I got the same woman who when I first called to find a psychologist with expertise in both PTSD/trauma and depression gave me four names where either the person was no longer in the plan or was outside my ability to travel. When I called to report this and ask for appropriate options, she became belligerant and defensive, and so I ended the call since I had already been through the provider list and discovered that there weren’t any at all who met the above criteria. This time, I asked her if she knew of any research or clinicians who dealt with ketamine for severe depression, or with rapid responses to severe depression.  She started in on the spiel that it wouldn’t be paid – it was experimental.  After a few minutes of this abuse – no referrals, no answer,  I told her I’d had enough and hung up. Ten minutes later the police were at my door.  Luckily, my computer screen was on and open to the complaint and disenrollment line, the coffee pot was full, and no weapons were    in sight (that last one is a joke).  The sergeant grilled me about what I had said that “would make her call”.  I explained about inquiring about the ketamine research.  I offered him the phone number to call the woman.  He couldn’t get past the telephony.  I had to sign a form declining emergency transport to the ED. The officers declined coffee, inquired as to the rent I pay for this attic dump, rolled their eyes at the response, and then changed the conversation to “we have to do our jobs.” I replied that experiencing public humiliation (lovely lights, multiple police cars and ambulance in the drive and street) and terror (nothing like having 5 uniformed and armed men on your doorstep banging on the door and demanding to be let in.  NOW.) was obviously what the HMO’s objective was, and they agreed. Which is just the latest experience which illustrates why I still have no health support, no trusting relationship with anyone, and no hope of finding same. What I ended up doing was perusing the research studies for chronic pain and finding several that are non-pharmacologic and low risk to enroll in. I was assigned to the treatment arm of two, and two more are simply looking at different biomarkers and immune responses.  I’m an easy stick, so I’m happy to donate a little serum to that cause.  However, one study requires a combo PET/MRI along with an arterial lineinsertion.  Having been on the managing end of those before as a critical care nurse, I think receiving one (they are uncomfortable at best) is a dose of my own former medicine. I wasn’t permitted to disenroll from the HMO.  The abusive case manager is still a “valued employee”, and I effectively have no health insurance, because there I will not provide any information to, use any provider affiliated with, or voluntarily use any aspect of that HMO’s products and services.  They really have the keeping costs controlled portion covered.  Abuse, terrify and threaten enrollees, collect their premiums and watch the profit margin soar. And the research compensation (for “subject “expenses”) will pay for dental and vision exams.  At least those don’t come with threats of imprisonment and assault and battery. (Optimism and hope, psychiatrists.)

Riffing off A Powerful Message

A week’s worth of (medicated) sleep, and my noggin can at least process a few thoughts, here and there. 1 boring old man published an important post titled, A Powerful Message.  He chronicled the increasing clamor of psychiatry to use a neural circuitry model as evidence of psychopathologic causality and therefore an avenue for research and treatment.  I had noticed this, too, with increasing alarm and a sense of deja vu. I yammered a bit in a comment:

As a long time critical care nurse and educator, I witnessed an enormous transition in thinking about the care and treatment of myocardial infarctions (heart attacks). Care and treatment initially and historically was focused on complete bed rest and inactivity – up to and including only allowing room temperature food and drink lest cold irritate the vagus nerve. As the plumbing and electrical circuitry interface with the muscle stimulation and perfusion became more well known, treatments became more aggressive – getting patients up and moving right away, reperfusing coronary arteries and stenting them, ablating lesions, etc. Then the focus spotlighted statin use for prevention, concomitant with pharma DTC advertising and KOLs. Only recently has any of this been questioned, and lo and behold, stenting and preventive statin use may not do anything at all in terms of disease prevention.

Not for nuthin’ has clinical depression been found to coexist and correlate with heightened morbidity and mortality with of heart disease.

Patient stays in critical care units for heart attacks (MIs) went from 7-10 days to 1-2. Of course, patient education, diet teaching, stress management, socioeconomic assessment went out the window. In other words, self management and quality of life factors were ignored and abandoned. Patients are sent home with prescriptions, stents, pacemakers, automatic internal defibrillators and all manner of coronary hardware, and sometimes followup appointments. They are not linked to case managers, community resources and psychosocial supports.

The forces of capitalism, free markets and decreasing corporate regulation have converged to erode worker protections, environmental protections, food safety, community development (corporations receiving tax breaks, outsourcing jobs to other countries and pulling up stakes, leaving communities dying on the vine), and overall, contributing to the deterioration of social life and community throughout the US.  Vicious and poisonous politics have contaminated the well of civil discourse.

Whither health and well-being?

Here, my collegiate roots show.  Case Western Reserve University’s Frances Payne Bolton School of Nursing and the Department of Nursing Education, Teachers College, Columbia University, both were founded on the critically important work of nurses who established, grew, and nurtured public health and psychiatric nursing theory and practice.  My education was based on the principles and practices of Lillian Wald, Hildegard Peplau, Virginia Henderson, Isabel Hampton Robb (yes, the Robbs of Johns Hopkins and later, Lakeside Hospital of Case Western Reserve – this hospital was noted by Flexner in his famous Report on Medical Education, for serving as an exemplar), and Mary Adams, pioneer in gerontologic nursing and later a Dean at her home state, South Dakota’s State University School of Nursing.  These names will mean nothing to almost all members of the public, physicians, and sorry to say, nurses.

But I hope you’ll click on the links because their work has critical importance and influence on the individual, family and community health and well-being of Americans today. What you will see is their universal concern with the immediate and larger social and community environments which affect health and well-being of the targeted patient populations.

Physicians, nurses and indeed, all members of the (licensed, ergo, regulated) helping professions have an obligation to address, influence and lead policy and programming which are congruent with and supportive of a healthy environment and social life.  Those include wages which allow adults to work a single job and provide for safe shelter, clean water and air, nutritious fresh whole foods, reliable transportation, access to education and natural recreational facilities and adequate protective clothing for themselves and dependents.  It means assuring clean air and potable water.  It means assuring access for all to basic communicable disease prevention: vaccines, safe food, zoonoses prevention.  It means worker protections which promote tolerable physical and psychological stress levels.  It means protections for whistleblowers – rewarding workers for upholding ethical business, research and professional ethics.  It means promoting civil discourse and discouraging ostracism – whether that be racism, bullying, intimidation or any other type of behavior which is exclusionary.

Embracing the classical virtues and publicly upholding the inherent worth of every person will lead more to health and well-being than any pill, potion, invasive treatment or state of the art assessment tool.

The bottom line:  Each and every member of a helping profession by the social contract is an agent for social change.  Without that, patient treatment is devoid of care. And treatment will only palliate and blunt symptoms, rather than address disease and distress causality. Futile, impotent and, ultimately, destructive. Like this, perhaps: