Friday, September 27, 2013
Friday, September 13, 2013
This may come as a surprise to you but there actually is no medically based diagnostic test for any psychiatric illness. The second sobering thing to understand is that the diagnostic process that is used for any psychiatric illness cannot in any way be described as "accurate" and upon closer inspection certainly not scientific. "Diagnosis" - if it can be called that - is performed by observing "behaviours" and then checking them off a list. The behaviours are described in the DSM - the diagnostic and statistical manual, the "bible" of psychiatric diagnosis. To understand psychiatric diagnosis, we first have to understand this manual and how it gets put together.
This is from the Neuroskeptic.
“In these studies, the reliability of the new diagnostic criteria for different psychiatric disorders was measured. The new editorial is a summary and discussion of the field trial data.Two different psychiatrists assessed each patient, and the agreement between their diagnoses was calculated, as the kappa statistic, where 0 indicates no correlation at all and 1 is perfect.It turns out that the reliabilities of most DSM-5 disorders were not very good. The majority were around 0.5, which is at best mediocre. These included such pillars of psychiatric diagnosis like schizophrenia, bipolar disorder, and alcoholism.Others were worse. Depression, had a frankly crap kappa of 0.28, and the new ‘Mixed Anxiety-Depressive Disorder’ came in at -0.004 (sic). It was completely meaningless.”
This, by the way, was performed and compiled by the DSM-V committee in which the psychiatrists were hand picked. What this essentially boils down to is that the people who are authoring the manual upon which psychiatric diagnoses are based can't even accurately diagnose anything using their own criteria. Let me repeat that for you - the very people responsible for compiling the new (and since released) diagnostic manual that psychiatrists around the western world will depend on for diagnostic guidance and criteria cannot diagnose anything accurately based on their own diagnostic criteria.
You might also be surprised at how "disorders" get included in the manual; they're voted in by - get this - a show of hands.
Canadian psychologist Tana Dineen reports, “Unlike medical diagnoses that convey a probable cause, appropriate treatment and likely prognosis, the disorders listed in DSM-IV [and ICD-10] are terms arrived at through peer consensus”—literally, a vote by APA committee members—and designed largely for billing purposes.
The “science-by-vote” procedure is as surprising to a layperson as it is to other health professionals, who have witnessed DSM voting meetings. “Mental disorders are established without scientific basis and procedure,” [my bold - brad] a psychologist attending the DSM hearings said. “The low level of intellectual effort was shocking. Diagnoses were developed by majority vote on the level we would use to choose a restaurant. Then it’s typed into the computer. It may reflect on our naiveté, but it was our belief that there would be an attempt to look at the things scientifically.” [my bold - brad]
In 1987, a “self-defeating personality disorder” was voted in as a provisional label. Used to describe “self-sacrificing” people, especially women, who supposedly choose careers or relationships that are likely to cause disappointment, the “disorder” met with such protest from women it was subsequently voted out of DSM-IV.
Yes, you read that correctly; "disorders" can be voted in and then, on the basis of a protest, be voted out again. There is nothing medically scientific about voting "disorders" in and out of existence. Homosexuality was once a "disorder" that was only removed (for the 1980 edition) after strong protest from gay activists.
And there's more. This from lead DSM-IV committee member Allen Frances, who in a (year) 2000 interview with Wired magazine, declared,
"There is no definition of a mental disorder. It's bullshit. I mean, you just can't define it." ... "These concepts [of distinct mental disorders] are virtually impossible to define precisely with bright lines at the borders."
Frances became so alarmed at where the new DSM-V was going that he has become an outspoken critic of the entire diagnostic process and of psychiatry itself.
And finally, the lead psychiatrist over the formulating of the DSM-V openly admits that there is little or inadequate "scientific research" done to back up the diagnostic claims in the DSM.
"A primary purpose of this group then, was to determine why progress has been so limited and to offer strategic insights that may lead to a more etiologically-based diagnostic system. The group ultimately concluded that given the current state of technological limitations, the field is years, and possibly decades, away from having a fully explicated etiology- and pathophysiology-based classification system for psychiatry." [bold all mine - brad]
—Michael B. First, M.D. A Research Agenda for DSM-V: Summary of the DSM-V Preplanning White Papers. Published in May 2002.
So not only is there no clear etiology for any psychiatric disorder, by their own admission they're possibly decades away from having one (granted this quote is from eleven years ago and neuro-imaging technology has advanced considerably since then).
And this isn't mentioning the ties to drug companies that many DSM committee members have or how much funding the pharmaceutical industry supplies to the American Psychiatric Association.
And just to give further idea, there's this. This was from a neuroscience paper the source for which I no longer have. My apologies.
“neuropsychiatric (NP) disorders ... can still be viewed as part of the most complex disorders that are of unknown etiology and incomprehensible pathophysiology. The complexity of NP disorders arises from their etiologic heterogeneity and the concurrent influence of environmental and genetic factors. In addition, the absence of rigid boundaries between the normal and diseased state, the remarkable overlap of symptoms among conditions, the high inter-individual and inter-population variations, and the absence of discriminative molecular and/or imaging biomarkers for these diseases makes difficult an accurate diagnosis.”
This is essentially neuroscience confirming what Dr. Frances admitted - that "there are no bright lines between the borders" and that they have no idea what causes anything.
I will repeat - any neuroscientist will tell you that the human brain is the most complex device in the known universe. Even with the most mind boggling advanced and highly tuned instruments yet devised, bleeding edge neuroscience doesn't even really fully comprehend what is going on in there and why. Do you honestly believe that someone going by a corrupted and highly unscientific check list is going to know? I'll say again - I was seen by about twenty psychiatrists. None of them had the same thing to say. None of them could explain anything to me. None of them gave any indications they understood why these things were happening to me in my mind. Aside from a routine CAT scan to rule out concussion damage and a test to analyze my brain activity while sleeping, no actual medical tests were ever performed. And this will be true of anyone ever "diagnosed" with a mood or psychiatric disorder. This is not medical diagnosis, not even close. It's modern day voodoo at best. I'd go with a tarot card reading before I ever put myself in these people's hands again. They have about the same scientific basis.
And then - then! - these people, after this simple check list "diagnosis", are going to pull out a prescription pad and prescribe either a drug or more likely a combination of drugs to "fix" what they "think" is "wrong". Drugs which, as I've written before, lack any kind of scientific validity for long term efficacy, drugs which could induce suicide or violent behaviour or cause critical structural changes to the brain including tissue loss.
Back to the four year old who was killed by a "psychiatrist" and for whom Tufts Medical Center felt "The care we provided was appropriate and within responsible professional standards" (60 Minutes, 2009). Seriously? Drugging a four year old to death is "within reasonable professional standards"? Where were these people during brain anatomy classes? Read any neuroscience book. The brain is still in rapid development stage at that age. Not only are behavioural issues common at that age as the developing brain struggles to make sense of and adapt to a seemingly bizarre world but it is beyond comprehension that brain altering chemicals could ethically be given to children whose brains are still developing. Yet "paediatric bipolar disorder" is now a common diagnosis and infants as young as three or four are put on cocktails of powerful drugs. And brain development goes right up past adolescence (the brain also undergoes massive changes during the teen years) and this age class is increasingly drugged (and off label at that - the drugs were never approved for non-adult use). And this isn't "Billy Bob Psychiatry" hanging a shingle out in some back water town, this is a major medical centre. And this is who we trust with our one and only precious brains?
No. I say no. And this is only the tiny, tiny tip of the iceberg of what I found for psychiatric misdeeds, the financial ties between the pharmaceutical industry, the FDA and the American Psychiatric Association and what is available for long term studies and research into psychiatric drugs (and thus psychiatry itself) efficacy. You might want to watch some of former drug company sales rep Gwen Olsen videos in which she describes how drugs are pushed to psychiatrists' and doctors' offices, old age homes and schools in order to "gain market share" and "make sales quotas" like they were widgets or some other kind of everyday product and not something that we trust to treat our brains.
Psychiatry doesn't have a shred of clothing to wear. They have no scientific basis for diagnosis and they prescribe medications that have no scientific validity whatsoever. These are drugs that the effects of which are unobservable in the human brain (unlike medications for other medical conditions) "treating" conditions for which no biological etiology has ever been established and accepted (please try to find one - I'd be interested in seeing it. But head to the Nobel Prize committee first; they'd be interested in this discovery). I see no validation whatsoever for the "Dr" in front of their names that they so proudly flaunt. They get by entirely by the infamous "God complex" - they simply believe they "know". By what criteria? Nobody knows. A reading of psychiatric history is a reading into some of the worst horrors ever inflicted on innocent people (psychology is not innocent of this either). The barbaric practices of ice pick lobotomies and insulin shock therapy (you'd have to read about this to believe it) are not far in their past. Under their watch we have seen an explosion of people debilitated by psychiatric illnesses, including a thirty-five fold increase among children.
Personally, I wouldn't trust them to treat a headache. Anyone who's been successfully "treated" by mainstream psychiatry most likely did so through belief in their doctor and placebo effects which makes it no different or better than the shamans and witch doctors that still operate in many cultures (my friends in the Filipino community told me some fascinating stories of this). If someone claims to have been successfully treated, I'd ask for the before and after medical tests that prove that. There are none. "Successful treatment" just means that you were one of the lucky ones. Or the condition just passed normally as they did for thousands of years before "modern" psychiatry began getting involved in our brains and behaviours.
Given the hundreds of "disorders" in the DSM that cover just about every human behaviour imaginable and the completely sham system of diagnosis (described by many as merely a system to justify insurance claims and writing prescriptions) or the medicalizing of perfectly normal human behaviours (bereavement following the death of a loved one is now considered a "disorder" in the new DSM-V), I find myself highly sceptical of anyone claiming a psychiatric disorder (and given the distinct possibility that the drugs to treat it are actually prolonging or worsening it).
This is NOT to say that psychiatric disorders do not exist or that there are not people who genuinely suffer from them, only that there's a good chance one was misdiagnosed (over diagnosis is a widely recognized problem ... a story possibly for another day but "ADHD" would be one that would be firmly in the cross hairs) or that one is simply "suffering" from being human and therefore not perfect. Situational unhappiness, temper tantrums, mood swings, acting out and dozens of other behaviours were not "disorders" until a combination of perfectionist seeking society started overreacting to them and modern psychiatry, backed by the profit seeking pharmaceutical industry (and statistics will show that "disorders" sky rocketed after these two linked up about five decades ago), decided - and I do mean decided, see again the vote by a show of hands - that so much of normal human behaviour is an "illness" that can be made to go away by a simple pill (or likely a cocktail of them).
This is an industry that has no clothes. And I see no sign of them acquiring any any time soon.
[I apologize again for the formatting issues. It all looks normal and the same in my composition box but when I post it, the formatting is all strange - brad]
Wednesday, September 11, 2013
Monday, September 9, 2013
Ultimately it comes down to this.
you'll be left to fight this alone. The drug pushers can't help you,
all they know how to do is make random stabs in the dark and write
prescriptions. I know that it appears to "help" some people
and this re-enforces this practice but for many it does not work and
they end up unable to function and on long term disability (Robert
Whitaker cites the numbers, taken from US government sources, in his
of an Epidemic) or commit suicide (estimates are that one in five
people who are truly bipolar (as opposed to the misdiagnosed kind or
minor hypomania) will commit suicide). No empirical or long term
study data exists to support true efficacy of psychiatric drugs while
data does exist pointing to the brain damage it causes. Psychiatric
drugs such as SSRI antidepressants are strongly linked to suicide (as
are other psychiatric drugs) so it is possible that long term drug
use is a factor in that high suicide number. I myself became much
more suicidal when on psychiatric drugs. At any rate, psychiatry is
not a help to my situation and by extension the mental health care
system because their entire model is based on psychiatry and drug
Ultimately family have to distance themselves from you. After a while they can no longer handle the intense mood swings between maniacal highs to suicidal lows. People are wired to distance themselves from unstable people. This is nobody's fault, it's just their own instincts of self preservation functioning normally. Hell, even unstable people don't want to hang around unstable people (all the friends I made while in psychiatric hospital eventually stopped contact. Which you can't blame them for. They just want to get on with their lives, not be reminded of the time they were in the loony bin.)
It takes great courage and uncommon levels of empathy to step outside one's self preservation mode and my family simply could not do that or sustain that. I really believe they tried but ultimately they listened to their instinct to back away. That's what my daughter had to do. She was daily witness to the swings between the highs of love of life enthusiasm and runaway optimism and suicidal depression and hospitalizations. She just simply could not handle or watch it any more. She's highly sensitive herself and HAD TO distance herself to protect herself. It's either self protection mode or they simply deny what is happening and pretend everything is fine and that there's nothing wrong, something that I found unacceptable.
There's intense inner pain but worse pain is when people who "love" you deny that pain. They will see you and be social as long as they can live in their own fantasy world that everything is OK. If that is "love" then yes indeed, love hurts. I can do without that kind of "love". Others will flat out tell you that they can no longer handle your situation and that they “have their own things to deal with”. Others will tell you that you are just drama making and attention seeking. Which, whatever, that's just the way people are. The end result is abandonment though. What makes it hard is the comparison to stories of psychiatric survivors and the roles undying family support played. Sometimes, just sometimes, I wonder why I didn't get that support. Some very valuable financial support I got, and was very grateful for, but not the vital emotional support.
One thing that will affect how you're impacted by a mental illness is how emotionally sensitive you are. I am, I have to admit, extremely sensitive. I've talked to other bipolar peeps who've told me the same thing, that extreme sensitivity is a big part of their issues. This is where the psychic pain comes from. I'm not always like this but when I am, I'm extreme. (true bipolar is a world of extremes) And it seems the more the illness runs its course the more sensitive you are to psychic damage. This is also a hallmark of borderline personality disorder (extreme sensitivity to facial expressions and tones of voice causing violent mood swings) which is often, according to Psychology Today's Taming Bipolar (which, by the way, was the genesis for this blog title), "comorbid" with bipolar. Psychic pain is beyond explanation. There's no "data" or "research" to back it up or any way to look at it or measure it in a lab. It just is. David Foster Wallace and other writers describe it best. Foster described it as a sheet of flame at one's back while standing at an open window. Psychic pain eats at me like battery acid. And it can come from anyone, anywhere and any time. I can't tell you how much work I've put into controlling this but I just can't. Whatever it is, it hard wired now. It's why I battle agoraphobia. Any contact with any human can add to the pain and thus contribute to a complete suicidal melt down. All it needs is that one flick of a match to trigger it. It's beyond bizarre and incomprehensible to virtually all people but there ya go. It's daily hell to deal with it. I can go for days thinking I'm "dealing with it" well (doing all my little CBT stuff) but then it'll all come searing back and erupt without warning. Then the next thing I know I'm handcuffed in the back of a police car and off to the psychiatric ward again. Ultimately, I can't live like this - walking on the eggshells of my own mind not knowing when or why I'll melt down again. This alone is madness making.
Ultimately I can't live on welfare. I am a proud working man. My entire sense of self is built around earning an honest living exchanging my value with someone for their money. That, deeply in my view, is the right and honest way to live. On welfare I have no value. I am not one of those who can "manufacture" value out of this situation and make it seem acceptable. Oh, I tried, I tried to put all kinds of positive spin on it but ultimately I can't. I am a man who always paid his own way. A man who was proud to have owned a home. I am a middle class man with a middle class background who lived a middle class life. The pain and shame of subsisting on welfare is unbearable to me. It is not what I was born to live. I was born to chase dreams, build a modest amount of wealth to take care of myself in old age. Losing that and falling to this is unquestionably the worst psychic pain I feel. I know I am supposed to practice "acceptance" and "letting go" but I just cannot. I can for a spell but then it too will come searing back out of the blue and the pain of the flames on my soul will be great.
Ultimately, I can't live without my mind. I've lost everything I've ever worked for and then some (I owe tens of thousands of dollars). I lost my ability to work. All I have left is my mind. Then I lose that. There are days when my mind just will not respond. I can't read or do any writing, let alone the tougher research that has been my purpose. Days of utter waste go by. I can deal with a few hours. But when it becomes days I get incredibly distressed and frantic. Insanity is like that. It is, I'm sure of it now, the accumulative brain damage from years of manic depressive cycling and the years of constant stress. I've lived below the poverty line for more than five and a half years which research now shows produces brain altering stress. Mental instability produces its own kind of stress. There was years at a high stress job (not just high pressure, that I can handle, but stress about getting paid or not, unreasonable demands and many other things a person with extremely low tolerance for stress is badly affected by). Constant and rapid cycling changes of state appear to cause brain damage (as autopsies on deceased bipolar people reveal) and other research shows that stress can break down the brain at the neuronal and axon level. Plus, in bipolar depression the brain can just literally shut down. The stories of people in the throws of bipolar depression being completely non-functional are legion. Kay Jamison's An Unquiet Mind describes this very well (though I found her depictions of her "mania" a bit specious). There's just no doubt in my mind that the brain shut down I experience is part of the long term outcome of bipolar disorder. I tried and tried and tried to fight against this and deny that it was happening and I've improved over the worst that I experienced in previous years but it still just hammers me. And though I can rationally understand all of this I just utterly can't stand feeling so non-functional. The one dream I have remaining is to research and write about this disorder and when I can't even do that I get extremely distressed and dark feeling. My writing and research was the one way I felt I could contribute to society and "earn" the government cheque I receive. When I can't even do that I feel even more worthless.
Ultimately, this is not a life. Lying around, confined to my room and non-functional so often. I was always a man of adventure, passion, exploration and full of life. My life almost always had meaning. I've always had lovers and love and travel and romance and chased my dreams. Now I have nothing and am scared shitless to even dream about anything more. I look at this today and it's not life. Not in my books. Rising each morning and merely drawing in breathe is not life. And being totally and utterly helpless to pursue what I feel life is is literally maddening. Or sometimes I just can't stand being a useless sack of shit welfare bum (my former working class values speaking).
I cannot even begin to tell you how hard I've worked at this. I work on my positive difference making fundamentals all the time. I am not a negative person. I smile most of the time and say kind things to people. I work like hell to have a positive attitude about everything. I read positive materials. I've retrenched probably a hundred or more times in the last five years. This doesn't work out? Retrench. That doesn't work out? Retrench. Retrench and retrench and retrench. I've retrenched all the way down to being a welfare bum. I can retrench no further. I've done everything they told me to do. I've been in the hospital four times and each time I was the hardest working person on the ward doing everything possible to get better. I've done things that I had to develop myself (based on latest neuroscience). I work almost every hour of every day at dealing with the frustration of living below the poverty line while dealing with a major mental health disorder and calming myself not to feel that frustration. And this hurts like fucking hell too. No one can see how hard I work. No one knows how hard this is. NO ONE. (in my life, not in the world. I am of course aware that many others have gone through this) One could look in my room and see me lying on the bed with my eyes closed. What's going on is that I am working like hell to avert a full catastrophic melt down. Or trying to build up my mind. It's incredibly hard work. But what do they see? A welfare bum lying around on his ass doing nothing. People will see me melt down and think that I'm just weak and not trying. What they don't see is the dozens of other times I worked through a melt down to avert it. What they don't see is the hundreds of hours I've put into research and the work I do to build up my mind. When one is seeing a person re-habbing from physical injury or illness or fighting cancer, everyone can see how hard they work. Not with mental illness. It is truly the silent illness. And you'll suffer it alone. Which leads to the final blow.
Ultimately, I cannot do this alone. Can NOT. Personally, I think I've displayed superhuman strength to get this far (and my psychologist, who was more familiar with my struggles than anyone on earth, agrees). But I'm like the fucking rat in the water stress test. The water stress test is when they put a rat in a tank of water it can't escape from. It has to keep swimming to stay alive. They'll leave the rat in until it dies. At some point it'll just give up and stop swimming. Then they'll examine it. They'll find that all kinds of things in the brain and nervous system just simply break down. The non-stop stress of struggling for survival will just start to break things down. I've been swimming non stop in the water stress test trying to stay alive for more than five years. Things are breaking down.
Things HAVE broken down. I need help. I really, really, REALLY need help. I think my own program is good and would work but I cannot do it alone. I need feedback. I need support during the rough times. I need someone to hear me. So it was that for four months I looked forward to the free therapy program offered by the local university. It saved my life last year. And it is the ONLY resource that I have found that that worked for me (and trust me, I've hunted down every resource available and NONE worked out). This was ALL I had. So I literally counted down the days waiting for the new session to begin (they run with the school term from September until early May). They told me I was welcome to come back in the new session. In my darkest times I told myself to just hang in until therapy could start again. So the time finally arrives. They tell me that they have to reject me. My case is "too tough" for them (apparently handling my case was extremely stressful on my previous psychologist). What little wind I had in my sails was instantly gone. I cannot even begin to describe how devastating this was.
This is what I mean about ultimately facing this alone. When your situation is bad enough and you've been in the system long enough, you WILL end up facing it alone (simpleton pill pushing psychiatrists don't count. Their toxins made me a hundred times worse and I've never met a professional group more dimly uncomprehending of human suffering). Family can't help; they're simply not equipped. No friend could handle something like this. This therapy - this free therapy - was the only hope I had for help, the only hope I had for not fighting this so fucking alone. And now that hope is crushed. Just like every other hope I've had since this began. This is not "depression talking", this is literally no hope left. There are no other options. This was IT and now it's gone.
I feel like the character of Jesus Christ in Jesus Christ Superstar from the scene “Gethsemane (I only want to say)” when he cries "tried for three years, seems like thirty". It truly is like that. This suicidal madness started three summers ago and I've fought it for three years. But it seems like thirty. Seems like ninety. I can fight no more.
The brain has some remarkable survival tools for getting through dark times. That's how it evolved. We wouldn't be here as a species if it didn't. But this is what happens in brains with this kind and degree of mental illness - all that stuff breaks down. That's part of the illness, you see? With other illnesses other things are broken but the human mind is intact. The "indomitable human spirit" is merely a survival tool in the brain. A person will get down and go through extreme darkness but their essential survival tool remains intact to pull them through. But with mental illness the very thing that's needed to fight is the very part that is broken. This is why people commit suicide - that survival tool is either broken or was overwhelmed. This is what 99.9% of the population - and the medical field itself - don't understand. The essential survival tool in the brain breaks and simply cannot go on.
Ultimately I don't know what the big deal about death is, I really don't. I don't consider this suicide, I consider it self administered euthanasia. I want to end this and to end it on my own terms. In a stretch between July of 2010 and late last year I suffered through many mania driven states of suicidal madness (during the dreaded mixed states when it's thought that most bipolar suicides occur) or horrific states of suicidal psychosis (hallucinations of great violence to myself and demands to carry it out). These always involved violent deaths. I have no idea when these may return nor does anyone. There's no "book" on this. When they do, I just know that I'll have no control over them. The brain shuts off any kind of concious cognisance. The madness is in full control then. Most people have no idea what this is like because quite frankly, few people survive this (and my suicide expert psychologist agreed. She utterly could not believe what I survived). I don't want to go violently. I want to go peaceably. So I want to choose my own terms and place and time. That's all I ask for in life now - to go on my own terms. I feel I don't have to justify this or explain it to anyone. ANYONE. I don't care for anyone's Biblical morals about this that say that "only God can take a life". Fuck that. I believe ownership of one's life is the ultimate divine right. I'll do with my life what I feel is right. You'll argue that this is "selfish". And I'll argue that your wanting me to continue to suffer is selfish and a worse kind of selfishness. I was not put on earth to suffer, that I know. I have nothing to say to people that believe that to suffer is to be noble. I see no nobility in suffering. I will accept no judgement from those who cannot feel or know my pain. Pain is relative and this is too much pain for me to bear. All I want is to be respected for my views.
I have a plan. And a place (roughly. the spirit of the place is what's important, not the exact location). I want to go peaceably overlooking a peaceful scene. My grandfather died in his sleep in his favourite recliner. I always thought that was the perfect way to go. I want to go like that. I just need to acquire the right material.
I have things to tie up first. I want to e-publish my book first and finish a series of stories for my daughter. Then it will be time.
[PS - I have been in a very dark state for a week now (well this bout of bipolar depression and darkness started in late May but I mean this particular stretch of particularly bad darkness) and was very dark when I first conceived this post. This post isn't nearly as dark as when I first conceived it. I had to considerably calm myself down before I wrote it. ]
When I started my search into neuropyschiatric disorders in early 2013 and both evaluated my own case and that of dozens of other cases I read (some at great length and in great detail), I came to the conclusion that some of the greatest difficulties of bipolar disorder for those who cycle through highs and lows are less about the illness itself but are psychological in nature. I identified three factors that I thought played significant roles; confusion, frustration and the nocebo effect.
When you get hammered with a psychiatric disorder like bipolar or schizophrenia - or even a bad bout of depression and anxiety - the truth is nobody will know what's going on nor know what to do. This is particularly true of doctors. Psychiatrists are only slightly better. Except in rare cases where somehow the roulette wheel of life lines you up with a psychiatrist who is more than a pencil pushing prescriber of drugs and actually knows what's going on AND can explain it to you and your family, you will get no one in the entire mental health care system who knows what he or she is talking about. On top of that, you'll get all kinds of completely useless and probably detrimental "advice". All of which is going to be a fire hose of gasoline on the fire already going on in your mind. In other words, a lot of high stress and anxiety inducing confusion.
Also thrown in the mix - largely because of above mentioned confusion and lack of anyone able to know what's going on and take charge and explain anything clearly - will be the mind's unfortunate ability to make mountains out of molehills or if you truly do have mountains, make them much bigger and throw in some landslides for good measure. I am talking about the nocebo effect, which is the opposite of the placebo effect. The nocebo effect is the mind's imagination run viciously amok. No one - least of all me - is arguing that what's going on with you is all a figment of your imagination, but the fact is that the mind will tend to make things far worse than they may actually be. Trust me, calming down a lot of "nocebo beliefs" about my condition was a massive part of improving my mental health and getting a grip on what was really going on and why.
But confusion and the nocebo effect are two subjects that will have to wait for future columns.
Today I'd like to talk about frustration. I make no secret of my distaste for pharmaceutical drugs as treatment for mental health disorders and one of the reasons is that drugs can have no effect on psychological aspects of a disorder and in fact may exacerbate them instead (1). Drugs may be able to “knock down” mania (the main goal of psychiatry in treating bipolar) but this is not without detrimental effect to the brain and cognitive functioning of the patient and the change in personality and the loss of cognitive functioning will have a strong psychological effect on the patient. For everything I write about in regards to mental health disorders I generally have the studies and data to back up what I write, but what you will read here are purely my own thoughts and ideas, albeit ones based on enormous amounts of research and much self examination (some of which came out of my nearly thirty hours with a psychologist) and, as I said, based on numerous case studies of others.
In my research into mental health disorders starting in early 2013, I had some of my own insights, insights in which I did my own connecting of the dots. For my thoughts on the psychological effects on those suffering psychiatric illnesses I found no research – or at least not yet – so this is all me. I started off using mostly only myself as a “research subject”, examining my own emotions and the basis for them, but by reading through numerous case studies and talking to others either online or in hospitals I could see this thread of frustration run through virtually every case and I came to conclude that it's quite safe to say that the frustrations we face during our struggles become a major factor in our inner turmoil.
Since my great insights in early 2013 and from what I learned from much study into bipolar cases I have been very carefully observing and making notes into my own daily mental conditions. I've argued before that my case is not that untypical for those who cycle through bipolar highs and lows so I believe my findings into my own states can be at least somewhat reasonably projected as typical. I'll also argue that my combination of being deeply and widely read and experiencing the mental and emotional ups and downs of a bipolar patient makes my “data” not only very relevant but perhaps better than what can be found under normal clinical conditions. I am also a very outside the box thinker who tends to look at problems from different angles. It is my firm belief that whether you suffer from bipolar disorder, have a family member who does, are a clinician or are just interested in learning more, there will be much to take away and apply from my views and ideas. But enough. All I can do is lay out my thoughts and let the chips fall as they may.
From examining my own case and bipolar mind and, again, in talking to other bipolar people, I also think it's safe to conclude that bipolar is sort of a self-perpetuating factory of plutonium grade frustration. Mania just tends to place very high demands on us and others and not being able to meet those demands, which are very, very powerful and real feeling, just generates monstrous (almost literally) amounts of frustration which can often spill over into anger if not outright hostility.
I'll start with my current state and state the frustrations I feel that are directly related to bipolar cycles. Earlier this year I was in a high state, or mania if you will (I dispel elsewhere the myth that mania is always a boogeyman to be destroyed and will leave that for now). For those of us for whom mania can be a creative and energetic force, things come so ridiculously easy. Ideas, thoughts, insight can come amazingly fast and not only that, one will be blessed with great energy to keep up with it all. If I were to chart my productivity on a graph, the bar representing a six or seven week period earlier this year would have literally been off the chart. I conceived of and pounded out a hundred and sixty thousand words of my book within those weeks. Honestly.
Now? The complete and utter hundred and eighty degree opposite. I have almost zero energy and motivation and my brain is like mud. (2) I very much want to carry on with the research and writing I started but my mind has trouble reading, comprehending and retaining material like it did earlier this year. This is major frustration number one. It's like normally being a healthy fit marathoner then suddenly being partially disabled and barely being able to walk. This is almost unfathomably frustrating.
And I strongly believe it would be the same for anyone who goes from being a mental super athlete of the manic state to the disabled mental mud of manic depression (the term I use for the state opposite to mania). There's so much work I want to do but my brain, mental and physical energy just won't cooperate. It's extremely frustrating. Again, I think anyone who's used to being highly physically active then suffers a debilitating long term injury can relate. How bad is this frustration? I wrote earlier about bipolar and suicide and make the case for this contrast between these states being so unbearable for some people that they commit suicide. Yes, it can be that bad. I've been there on the edge of suicide in these states.
As someone who's cycled through these phases many, many times there's this “oh no, not again!” frustration. Every single time I've been manic I've either not understood I was manic (mania is famous for this. It can give the person great insight into everything except the fact that they're manic!) or just believed that this time I wouldn't crash or descend into manic depression. Yet every time I do. Every. Single. Time. Every time I think to myself, I scream to myself, “fuck!!!! Not AGAIN!!!”. This time I was extremely aware of what could happen and did amazing amounts of work to prevent it yet because of life events beyond my control it happened anyway. (3) Extremely frustrating. And again I think anyone with health or injury issues who does lots of work to avoid them happening only to have them reoccur can relate. And again I think anyone who experiences manic depression again after believing that it wouldn't happen to them again would feel this same pain and frustration.
While it doesn't for everyone, bipolar can eventually cause major life changes. Bipolar and stress go hand in hand (a topic for another day) and long term stress WILL break down the brain and body. Plus you get the mental shifts and depression. What this will lead to is employment issues. As in unemployment issues. And this causes – guess what – more frustration. Bipolar people, at least those of the better highs as I've described, will by nature be proud, generally confident and independent and having unemployment and the resultant cash flow issues and inability to work, find work or hold a job if they can find work WILL BE extremely frustrating. This is where I'm at now. It's extremely frustrating and it's hard to see where the end is. This uncertainty and inability to see the end is even more frustrating. Anyone with employment issues can relate. Just not being able to be a normally functioning productive person contributing to society is extremely frustrating in itself.
Your brain won't be the same way two days in a row. It's kind of like a roulette wheel. One day it's one way, feeling not too bad and you think things are on the upswing. The next day you've been pile driven right back down into the depths of darkness, despair, hopelessness and your brain is stuck in molasses. And there's lots in between. This makes it hard to plan your life. What mental state can you count on? You can't. So it's very hard to make plans. This is all super frustrating.
Sex. Yes, sex. We are people and like any people we have sex drives (often in mania too much sex drive). But here you are; you've got a major mental illness, you're unemployable and probably broke or very low on money and probably have any number of issues. Well guess what, this doesn't put one on any list of desirable mates. Countless studies will confirm that people with major mental health issues, especially bipolar and schizophrenia will tend to become isolated. There are many reasons for this (and again, a topic for another day). So finding a meaningful relationship becomes very difficult. You'll have to trust me on this. Myself, I am feeling this frustration big time. For me it's something I'm not used to so it's a new frustration for me. Schizophrenics I am pretty sure suffer this more than any other mental illness as their lives tend to be the most disrupted. I know almost everyone can relate to relationship difficulties. We will all vary on this, of course, but sexual frustration is very real and very hard on a lot of us.
Frustration begets frustration. Dealing with frustration doesn't help one deal with life stuff and frustration can often cause more life difficulties which leads to more frustration which leads to more difficulties and so on.
No one understands what's wrong with you. Bipolar – or any mental health issue – is dreadfully misunderstood. There's lots of stigma. Or outright denial of there being anything wrong. My family largely was like this. I once made great pains to describe it all in emails and the emails were ignored. The family mostly brushed it off as nothing or as a lot of drama making on my part. This was, and is, EXTREMELY frustrating. And hurtful. For a long time I just had to stop communicating with family (and thus become even more painfully isolated). And this is true of almost everyone I know in the bipolar community. It's very frustrating and painful to be going through something so difficult (and in my case, potentially fatal) and get so little understanding and empathy. I think anyone with a rare disorder that's poorly understood and difficult to see in a person can relate.
As part of this lack of understanding and empathy comes one of my “favourites” - unsolicited advice. People will feel they can tell you all kinds of things in the name of “well meaning” advice, 99% of it useless and ultimately frustrating. Ironically, some of this can come from people who may have milder forms of bipolar who somehow escape the worst of it. They'll think, “hey, I've got bipolar. Why can't you deal with it like I do?”. These can be the most frustrating especially when one is in the depths of suicidal despair. There have been many times in the last several years when I've wanted to poke people's eyes out with a red hot poker.
Hhhmmm, it's little wonder, now that I think on all this, we often end up becoming isolated.
All of these things add up to a great deal of frustration and, I argue, this becomes a large part of the soup one with bipolar is going through. All these issues are real (and there may be others that I haven't described here) and not only are they frustrating, they're deeply upsetting. While not the illness per se, they become a great part of the sufferer's psychological make up. And more frustrating is that the docs don't get stuff like this. There's no pill to prescribe, you see (though they could well try, probably with anti-anxiety drugs).
And speaking of the drugs, I'll argue that these cause a great deal of frustration. They certainly did for me and my research tells me that I'm not alone. Lithium has bad side effects (a Parkinson’s like hand tremor for one). Anti-seizure drugs for epilepsy that are given for mania have bad side effects, not the least of which is impairment of cognitive functioning. Ditto with anti-psychotics. Anti-psychotics also cause considerable weight gain something that for a life long thin, athletic guy I found humiliating. There is a lot of research on all of these side effects (which I hope to get to in more detail in a future column). I found all of these are extremely frustrating to deal with. I hated all of it (and these are among the reasons I rejected pharmaceutical treatment for my condition).
There are ways to deal with all this frustration. One is being aware. I used all kinds of meditation techniques, cognitive behaviour therapy and other distracting techniques. But this is one of the “fun” things about bipolar. Pressure can build within and it'll just erupt and there's nothing a person can do about it until it's over. Bipolar just kind of works like that. With improved insight and lots of work one can learn to prevent some of them but not all of them. Not if there's too much frustration, life difficulties and stress going on. Sometimes all it takes is that one twig too many on your back to break.
And the unfortunate thing is that the system is not built to recognize core psychological difficulties such as frustration. The system is designed to do one thing – dispense drugs to “knock down” symptoms. The doctors are not psychologists trained in listening to other problems. So while we might be suffering from a lot of frustrating side issues and are being worn down by these frustrations, there is very little in the way of resources for dealing with these issues.
It is my very firm belief that there are many strong psychological factors in how people suffer with psychiatric disorders that are not recognized nor researched enough. When I examined my own case deeper this is what I found and it's what I could see when reading people's case histories. I'm going to continue to explore what I think are the psychological factors of psychiatric illnesses and post what I can.
Addition - January, 2016.Since originally conceiving and writing this piece two and a half years ago I have done a great deal more study into the brain and body's stress response system and have learned that while psychological in source, frustration is another powerful emotion that will chronically activate the stress response system and thus high levels of frustration and anger will lead to grave physiological damage as well. Learning to better understand and tame my "frustration polar bear" has been very critical in learning how to better manage my moods and mental states.
(1) Since first writing this piece I have backed away somewhat from my position that drug therapy can't help with something like frustration. That was certainly my experience, and I know my experience matches that of a great many others, but I've had to realize that my experience and that of those similar to me is not universal. For a certain percentage of people drug therapy can knock down a great deal of the inner thought turmoil which for them may be the greatest source of frustration and confusion. With the worst of the troublesome thoughts knocked down, they can get their feet under themselves, feel more in control therefore get their lives better in order and thus experience less frustration.
I continue to maintain that drugs therapy will prove detrimental in the long run and long term studies (following patient outcomes over five, ten and fifteen year periods) bear this out.
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(2) Exactly a year after writing this post, by the way, and the debilitating lack of energy and motivation continues. (see the link below to understand why)
(3) I've since discovered what's going on with the crashes out of manic states and the resultant horrible lack of energy and motivation which I begin to talk about in a three part series starting here. [minor updates, changes and edits as of May, 2015]
Notes from December, 2014:
I'm now really glad I wrote this piece because I kept revisiting it and realizing more and more how toxic frustration was for me and how much it was delaying my recovery. So learning to better deal with frustration has also been a major focus of mine in improving my mental and physical health.
It is my hope that my readers can look at their own lives and identify sources of frustration and learn to handle it better and/or to let go of sources of frustration.