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Bipolar disorder – embracing neurodivergence and affirming disability

sunrise through the U-shaped double trunk of a pine tree

 

Bipolar disorder is a psychiatric diagnosis used to describe a condition that is often intensely challenging and sometimes even deadly. This post is background to a second post that I am yet to write about the consequences of insisting that disorders are not real. Here, I describe the transformative impact of psychotherapy on my experience of manic depression. Surprisingly this includes embracing bipolarity as a neurodivergent identity and the importance of affirming a disabled identity.

It’s known that the trajectory of what is commonly labelled bipolar disorder can change over time and become milder or go into ‘remission’ as individuals get older. I myself have had this experience except that it has coincided with significant psychotherapy milestones. I do wonder to what extent research has been done on this shift in bipolar symptoms in order to discover how those who have experienced it understand and explain it.

Psychotherapy has transformed the experience of “bipolar disorder” for me

I started talk therapy very soon after I was misdiagnosed with schizophrenia at 18 because doing so was one of the conditions of the university I was on leave from. I have had ongoing relationships with seven therapists (four of them psychiatrists) for about 30 of the past 35 years. (This in addition to the at least ten psychiatrists I’ve consulted at least once since I was diagnosed.)

Since about 2005 I have had the privilege of a psychotherapy relationship with a medical doctor who specializes exclusively in psychotherapy. Paul is not a psychiatrist, though he will prescribe medication within parameters set by a psychiatrist. Until COVID, we met weekly for 50 – 60 minutes.

When I first started seeing Paul I had significant attachment issues, despite having already been in therapy for about fifteen years. I did at least have an understanding of what childhood events had created these problems for me. I also had a much more unstable sense of self than I was initially aware of. Shame and fear played large emotional roles though I wasn’t necessarily very aware of either.

As Paul and I worked on my attachment issues, some key milestones were reached. Relationship behaviours that had been common receded and eventually disappeared. I lucked into new relationships that allowed for significant re-patterning of my attachment responses. I learned how to notice and experience my emotions and recognize that even unpleasant ones (and my dissociative responses to them) were telling me something useful. I gained more control over my responses to anger.

Two overarching achievements of our work together are that I now have a capacity for deep, radical acceptance, and my sense of self has become, and feels, extremely stable, certain, unshakeable, and resilient. “Self-ease” is not a widely used mental-health term, but to me, it is a critical one. My emotional and personal boundaries are strong and sturdy and while I can certainly be hurt and affected by how others respond to me, my core sense of self-worth does not change. What negative self-talk I still have is pretty much relegated to “David that was stupid.”

I do not want to imply that I am some kind of perfectly actualized individual. I still face many challenges. What I was able to do with Paul was build a very solid psychological foundation. My self-concept is premised on equity – that we are all equal in worth — and I have learned to put strong boundaries around that sense of self. Doing so has provided relief from some of the classic symptoms of bipolar disorder. Not because they have disappeared, but because I am able to weather them more safely and less disruptively.

My therapist, Paul, went through my last manic episode in 2017 with me

He was remarkably neutral and affirming during and after it. Although (with my permission) he had very frank conversations with friends about whether I needed to be hospitalized, with me he simply wanted to ensure neither myself nor anyone else was in any danger. He was very careful not to project a pathological characterization of my condition. With me, he focused on being affirming of the fact that I was safe and could continue to look out for my own safety. 

For about a year after that experience of mania in early 2017, I lived in its afterglow: seeing the world through very different eyes. Then I experienced some of the most challenging and long-lasting anhedonic and avolitional depression ever – months and months of doing the absolute bare minimum and sometimes spending many, many days in bed.

The skills I learned in therapy helped me to weather this period. I was never despairing or even deeply sad. Suicidal thoughts were sometimes there but they were not intrusive. I held myself and my experience with acceptance and self-compassion. And I was (barely) able to work enough to keep myself afloat. But life was a vapid, barren wasteland which my great success was simply tolerating. I tried more and new medications under psychiatric guidance but none really helped.

Finally, when I decided that the medications were not helping all that much and some were blunting my ability to face my emotional reality (and complicating my ability to sleep, as one of the drugs was modafinil), I stopped daily medication. 

This decision (which was gradual, first I stopped escitalopram, then aripiprazole, then modafinil) coincided with my last great achievement with Paul – identifying and integrating my personal values and developing clarity around the actions and work that bring me a sense of purpose and fulfillment.

And from that point on, everything shifted. Things became clearer and calmer. Since about February of 2020 I have felt a stability and contentment that I can’t honestly remember ever experiencing before. Paul has both faith and hope that this is a permanent change. Having lived with bipolarity for 35 years I am not so certain. But I do not worry about it.

Bipolar disorder and neurodivergent identity

My experience above might seem to support the idea that the symptoms that I was experiencing were all a manifestation of some kind of trauma or disconnection from my sense of self and purpose and that psychotherapy healed me. That is not, however, how I understand myself or what happened.

Most people struggle with identifying and living a life consistent with their sense of purpose. Few are born with an unshakeable sense of self premised on being equal in worth to others. I suspect a sense of self based on ideas of uniqueness is more common. Despite how widespread these psychological circumstances are, mania is a fairly rare phenomenon, as is the constellation of other experiences consistent with the bipolar label.

Paul and I have discussed the focus of our therapy over the years. One of the things that he wanted to do at the beginning was to help me to shift my attention away from avoiding mania (which had been extremely disruptive when I experienced it the first time).  I think he saw my fear of becoming manic (and psychotic) again as dominating my life. I am not sure that project worked out quite as he expected. When my last manic experience was over, Paul summarized it by saying “now that you have been manic again and seen that you can have that experience and still look after yourself, you don’t need fear mania anymore.” Thanks to Paul I no longer fear bipolarity or becoming psychotic. But, more than ever, because of the transformative experience of experiencing stable, coherent mania, bipolar is an identity for me.

From a very young age, I have been keenly interested in science, and to the extent that I took pure science courses in university, I particularly excelled at their practical components. Thanks to an honest psychiatrist, from early on I saw my bipolar experience as an experiment. And I observed closely.

I noticed a whole network of physical correlates to clinical mood. Sleep was the clearest, but also appetite (how much and what kind of food I craved), libido, and especially overall physical energy. Depression was, more than anything, lethargy, and elevated mood was energy. Energy and effort is something my body at times has an unusual and outstanding capacity for.

Another characteristic that feels intrinsic, is that while most people seem to have a preference for routine and consistency, and under stress-free circumstances will default to a relatively stable state, the organism I inhabit is defined by irregular, unpredictable oscillation. Buffers are chemical systems that have a strong tendency and capacity to return to a consistent state despite being disturbed. I’ve seen my mental and physical self as the opposite: despite efforts to assert stability, consistency and routine, oscillation will always triumph, at least physiologically.

This is a characteristic that defines the organism I inhabit and does not seem typical of the majority of people. ‘Neurotypical’ is one way of describing this majority, and ‘neurodivergent’ is how I have come to see myself and bipolarity. The differences that I see as characteristic of bipolarity are both helpful and unhelpful. Sometimes a single difference can be both. 

My recent emotional calm does not change this basic fact about the organism that is me. This underlying tendency remains though it seems I may have reduced the frequency with which it causes great challenges.  What is clear is that I have found ways to experience it with significantly less psychological impact. I will still sometimes spend days in bed in response to profound lethargy, and I have no doubt that I will experience at least mild hypomania again. The difference is that these states no longer seem to throw me emotionally and psychologically. (Elevated mood does, by definition, create a change in psychological outlook, but the grandiosity it can also bring is something I can resist.) My current understanding is that I have created a distinction between my physiology and my self-experience and the breadth of this distinction results in self-ease. There is a ‘me’ that can remain safe, secure, and relatively undisturbed as the bipolar aspect of my being does its thing. I hope that in separating the two I have broken the iterative loop by which the most disordered aspects of being bipolar arise.

I don’t love the term “disorder” or the label “bipolar disorder”. I think both are used too broadly by mental health professionals. I prefer the term bipolar or bipolarity. ‘Bipolar disorder’ should be reserved to describe states which are challenging or unhealthy. Perhaps ‘bipolar disorder’ is an apt description as any of the iterative way in which the intrinsic physiological difference of bipolarity can interact with our experiences to create wider and deeper oscillations with profound consequences, often not good.

Erasing disability: the personal impact of asserting that disorders are not real

Part of me would be more comfortable with the term ‘condition’ than ‘disorder’ because of the judgement implicit in the latter. But ‘disorder’ to me is an important acknowledgement of the havoc frequently, but not always, created by extreme manic, depressive or psychotic episodes. These states result more easily in some than in others. When and how this happens is a result of myriad dynamic, interconnected factors, some personal and biological, many of them circumstantial and social. However, my lived experience leaves me with the firm conclusion that there is an intrinsic, physiological way in which people who experience mania and certain forms of depression are different from most people. That difference is not, in itself, a disorder. It’s just a difference. But it is a difference that makes those experiences more likely to happen to me than to others.

Insisting that disorders are not real erases this difference and elides the complexity of my identity and my experience. Akiko Hart has written eloquently and comprehensively about this. It is much more useful to criticize the construct of psychiatric disorders in terms of the normative and invalidating power being deployed depending on when, how and why the term ‘disorder’ is used. Broad acceptance of a purely biomedical understanding of psychiatric disorders can condemn people to an existence defined by pathology. The construct of “personality disorder” is particularly abusive in this regard. At the same time, it is critical to recognize that some people find the term ‘disorder’ helpful and representative of aspects of our experience or even of our selves.

It is likely we can all benefit from learning to make the distinction between our worthy, intrinsically valuable self, and states of being which are challenging or unhealthy. Accepting the fact that some of these challenging or unhealthy states are rooted in the organism I have been born into is part of what it means for me to identify, affirmingly, as disabled. Disability describes differences that do not make me less of a person but do make it more likely that I will face challenges others without those differences will not face. Those who refuse to acknowledge the possibility that psychological experiences can be deeply rooted in (’caused by’, if you will, though that word also creates a philosophical boondoggle) physiological differences are, unwittingly, making a direct attack on those of us who identify as disabled. When professionals rigidly adopt this position they are doing far more harm than they know. 

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