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.