Disempowerment in mental illness

The idea that a psychiatrist could feel disempowered by mental illness may well seem ridiculous. Even when that psychiatrist is also a psychiatric patient, the notion may raise an eyebrow or two, although I am well aware that my professional position can put me in a position of power. Perhaps this knowledge is what also makes me feel so disempowered when I am a patient.

As a psychiatrist, I see people at times when they are low and crushed by life, perhaps seeking a diagnosis, perhaps not. Given that I work in addictions, many of my patients may also want a particular prescription, and they may seek support for their accommodation and their finances. They may seek psychological therapy, which is hard to come by and has long waiting lists. I know what is available, what I can and cannot offer. I may not always agree with them about what is best. I know what the diagnostic criteria are for different illness, and also when symptoms are less likely to point to a particular diagnosis.

But I can rarely fully appreciate each person’s beliefs, their background, and what may be right for them. I work with what I have, and I do my best, but I am well aware of the limitations of psychiatric services. They are understaffed, and of necessity deal with crises and emergencies, and with managing risk. Patients are often confused by what is offered, and by the need that services have to shed rather than nurture them.

Stigma is widely spoken of, and there is far more acceptance of mental illness than there was even twenty years ago – or at least of some mental illness. But there is still a reluctance to make diagnoses, at least some of the time. This can be very reasonable – it may not be helpful to make a diagnosis of schizophrenia after one psychotic episode, especially if other factors, such as drugs, were involved. But perhaps it’s important to mention it. Nothing is more frightening than that which isn’t talked of, and people jump to their own conclusions, which are often worse.

Being disempowered can be worse than feeling stigmatised, as you can rail against the latter. The former, by definition, tends to derail you. For me, like many others, diagnosis has been an area where I have felt unincluded and paralysed over the years. As a psychiatrist, making the right diagnosis may feel like an intellectual challenge, sometimes even a competition with previous diagnosticians, but it’s very different for the recipient.

I was given a diagnosis of depression then bipolar disorder, then back to depression, then a return to bipolar disorder. As a health professional, I was perhaps more worried than most that I might have a personality disorder, and I was well aware of the emotions, and even criticism, that such a diagnosis could engender. These shifts between diagnoses were not reassuring. But perhaps more importantly, I never felt that I was really a participant in any diagnostic process – it was more something that happened to me. In fact I suspected relatively early on that I might have bipolar disorder, but feared that if I suggested it, it would probably be refuted. So I became a very passive recipient of others’ opinions, unable to debate or even ask questions. And I think it’s important to say that this was not about my specific clinicians, but more my impression and experience of the whole system of psychiatry.

This has not only affected my experience of diagnosis, but also of treatment and support. My psychiatrist has been very good to me, but suggestions come from him, and on the few occasions when I have raised something myself, I have felt that I have come across as combative, or that I am asking for something inappropriate. I’m not sure whether I appear confident or not, but I certainly don’t feel it.

If this is how I feel, I can only imagine that it is worse for others. Many people have an impression of psychiatry from the media, from films and literature, and from other people. As psychiatrists, we should try to understand their ideas, not dismiss them as misconceptions. Even if done kindly, patients may be left bewildered or angry, and unable to participate. And I think that health professionals, especially those who work in mental health, may sometimes be at a particular disadvantage, because they know too much, including what is likely to be accepted or dismissed. But for those in the know, or out of it, the system can be a minefield to navigate. Symptoms and experiences don’t fit into neat little categories, or always warrant easy interventions, and those who don’t fit the bill can often feel rejected.

Mental illness is a reality, but psychiatrists have to use constructs to make sense of what they see, and to understand and attempt to treat people. This is fine, but patients don’t have the same constructs, and even different clinicians will have different ones. As a psychiatrist, I try to work with this, but as a patient I really struggle. One can fight, or argue, but even having to do so is a sign of disempowerment, of knowing that you are not on the winning side. Ultimately, for some, there is fear of compulsion, and once you’ve been on the other side of that – ever – it changes your view, in a way from which it is difficult to recover. Fortunately my experiences of this are minimal, but it is one of the reasons why I work in a specialty where it is rarely used. When people are very unwell, they may also require more paternalistic care, but this should always be balanced and considered, and it may be that their friends or families can be more empowered in such circumstances.

I would argue that disempowerment may be a subtle form of stigmatisation that we need to notice before we can address it. It may make life a little harder, but it’s the right thing to do.

3 thoughts on “Disempowerment in mental illness

  1. It is hard as a doctor dealing with a psychiatrist but I have a good relationship with him with debate and negotiation. I also know I probably get a better “deal” than other patients bease of my knowledge and training.
    But the GP service! Worlds apart because I can NOT get to speak to one to get the reassurance that they will be on top of blood monitoring and dose changes as I head towards starting lithium. They have so many layers of protection to prevent them speaking to a patient, from time consuming e-Consult to obstructive receptionists and at the last, just ignoring me. I feel ignored and sidelined. Presumably that’s how all patients feel…

  2. Thanks for sharing. It is wonderful to hear the perspective of somebody who sits on both sides of the desk.

    I suffered two episodes of mania and psychosis in my twenties, which I now see as periods of distress resulting from the breakup from my parents marriage, my father’s subsequent suicide, and the complex issues in my relationship with my mother as a result of decisions she took at the time and afterwards. I was diagnosed as “bipolar” after the second episode and put on lithium. The doctor in question was disbarred ten years later and I switched to a new doctor. This doctor maintained the diagnosis and medication, although added a psychological aspect to my care which was very helpful. Over a ten year period, and in tandem with a recovery process in 12 step recovery, I learnt to take decisions to protect my mental health, and gradually found myself feeling more settled and balanced emotionally. My doctor was supportive, eventually, of my decision to come off lithium twelve months ago. He did not, however, persuade me that he had any experience in how to deprescribe safely, and was defensive regarding the stories that he told me over the years to encourage me to stay on lithium (initially that I have a chemical imbalance, then more recently a genetic predisposition), and whether this was an appropriate and helpful prescription. I have lost confidence in him as a result. I am now tapering according to the guidelines of the lay community (ie very slowly, carefully, and at a declining rate), which I find sensible and supportive, and am an active participant in the lithium withdrawal: peer to peer support group on Facebook.

    I do still find it surprising that my psychiatrist appears to be ignorant about withdrawal from the drugs that he prescribes. It is clearly wonderful, however, that the internet provides an opportunity to connect with others who have been treated in the same way and gives me hope for a better standard of care for future generations. Looking back, I see the diagnosis, especially the insistence that I was suffering a from of chronic illness, and medication, to be forms of institutional abuse. I dont have any issue with the fit between my symptoms and the diagnostic criteria, which I find to be accurate regarding the issues that I was experiencing in my twenties. To still be on the same drugs in my 50s, however, when these symptoms have long since passed, seems to me questionable. I have yet to see any compelling evidence to back up his claims that I have a brain disease of some sort which requires a lifetime of drugs, and my experience so far suggests that these claims were baseless.

    I am slowly getting my life back as I come off lithium, and my world is expanding from the half life that I lived for twenty years. The process of emancipation from psychiatric drugs and the handicap of a diagnosis has been long, tough and required much self awareness and emotional support. My underlying issues needed to be explored, and the underlying feelings felt, which could only happen properly when coming off the drugs.

    I am about two thirds of the way through my taper now, and feeling better than I have done in years. This weekend I completed the round the island sailing race in Barbados where I am living. I am changing my work, taking up new hobbies and making new friends. I struggled to make these sort of changes while on lithium, because I was so comatose from the drug that I never really knew how I felt about anything. Living without feelings is incredibly challenging.

    What I most relate to in what you have shared is the way in which the diagnostic process and development of a treatment plan were undertaken without any input from me. I was treated by both doctors that I saw as though they were the experts in my mental health, and I had to access their opinions. Any dissent was treated as insubordination; they knew what was best for me, and that was that. Looking back now I can see that my mistake was accepting this status quo, and not trusting my own instincts at an earlier stage in the process. Nonetheless, I do feel a sense of betrayal. I do not believe that I was provided with informed consent about the care plan that I was given, and I believe that some of the assertions made to support that plan were at best opaque. I consider it extraordinarily arrogant of the professionals involved to be so definite about the diagnosis and medication plan they were providing, with so little information being provided about the limitations of their knowledge. Ultimately, the decision to take lithium for twenty years, with all of the consequences I experienced in terms of a diminished quality of life and potential long term side effects, was not made in a collegiate way that I bought into, but was made unilaterally by the prescriber, relying on his power as an authority figure and without full disclosure of the pros and cons.

    Now, as I study to become a psychotherapist, I am coming to see the transference in my relationship with my doctors, especially as it related to my father’s issues. The pattern of a father who was sadly not capable of caring for those in his care, and who ended up taking his own life, was repeated in my medical care, by professionals who I allowed to have pover over me, but who were not acting in my best interests. It was only when I finally resolved the issues around my parents, in therapy, that I was able to start to escape the ongoing abuses in my relationships with my doctors. I wonder how many others, whose mental health issues are rooted in challenging relationships with their parents, are stuck in similar patterns?

    I also wonder how many people are taking psychiatric drugs unnecessarily as a result of similar factors. My experience of discussing these issues with my doctor has not been particularly rewarding, and I am under the impression that he is not willing to talk about these issues openly, or consider his part in things. As a result, it seems as if the only course open to me if I want to progress things is to take legal action against him. That would be an odd thing to do, as there were aspects of the care that I appreciated, and I certainly do not have anything against him personally. I do feel concerned, however, that others are being treated in similar ways by psychiatrists, who abuse their power and end up doing more harm than good to their patients. It is also not clear to me how the power of the psychiatric profession to diagnose and drug unnecessarily can be checked, and individuals who are already suffering considerable distress can be spared further harm. If you have any thoughts about this I’d be interested to hear from you. Thanks again for sharing your thoughts, and apologies for such a long comment. These issues have affected my life so profoundly that it is hard to precis!

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