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Mental health, uncertainty, diagnosis and more!

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Interview with Héðinn Unnsteinsson


 

Mr. Héðinn Unnsteinsson is a policy analyst, a member of the Icelandic Order of the Falcon (an order of chivalry awarded by the president of Iceland to citizens who have done outstanding service to society), the author of a very influential autobiography about his struggle with bipolar disorder, recently made into an extremely popular solo performance in the National Theatre of Iceland. Also, immediate past chairman of the Icelandic Health Alliance (the largest alliance of users and carers within mental health in Iceland). An individual with a long history of community work and civil service, in Iceland and abroad, in a way a celebrity. I sat Héðinn down for an interview which took various turns and twists, although the theme was supposed to be uncertainty within mental health.



Páll Matthíasson: Can you tell me a bit about yourself?


Héðinn Unnsteinsson: I´m born in Borgarnes (a small town in western Iceland) 53 years ago. After my A-levels I studied medicine, first for a year in the United States, but then came home and started medical school in Iceland. I experienced my first psychotic mania, with the stress of living alone in Reykjavík and being a first year medical student. One could say that following this I started getting involved in mental health matters. I wrote a brochure on bipolar illness with my psychiatrist and consequently articles in the media and one could say that for the last 30 years I´ve been an advocate in mental health. Early on I got interested in mental health promotion, launched a campaign on this, got interested really in the dichotomy, to look at mental health and prevention, shifting the focus from mental illness. I felt it would be important to look at what we all have in common, which is mental health. Since then I´ve done projects for the Directorate of Health, Ministry of Health, the National Hospital and the Mental Health Alliance. I took a master´s degree in policy analysis in England and following that did a placement with WHO. I then worked for the mental health team of the European office of WHO, based in Copenhagen for four years. After I returned to Iceland I worked within mental health in the Ministry of Health for 3-4 years, before moving on to the Prime Minister´s office. There I worked for the next 12-14 years, first on government reform following the economic collapse of Iceland, then policy making, strategic planning and worked on a policy committee focusing on coordination between different ministries in certain areas. I continued to work on mental health from time to time, e.g. on a review and changes to the law on competence (mental health law).


Through this all I continued to be on the board of the Mental Health Alliance and took over as chairman in 2019, for over 3 years, but I decided to leave that post last year. So, it´s 30 years of advocacy and mental health policy involvement, with article writing and endless lectures. Last night I gave a talk in a local church on mental health issues, that was I think my 1300th talk in 30 years. Why am I doing this? Perhaps it is just an urge to influence things, change them – but also a drive to fight injustice.


Book by Héðinn Unnsteinsson "Vertu Úlfur – Wargus esto".
Book by Héðinn Unnsteinsson "Vertu Úlfur – Wargus esto".

You´ve written a book („Vertu Úlfur – Wargus esto“) which caught the attention of the nation and which was made into a solo performance which was tremendously popular. In it you describe your journey and fight against mental illness. Is there an overriding theme in all of this?


Yes, or no, perhaps it is an attempt to normalise something which one doesn´t want to see as abnormal. To try, with the tools of literature and metaphors like wolf and moon, to normalise and explain thought patterns, lines of thought which go above what we would call normal and become „delusions“, but at the same time are simply a logical consequence of the thought patterns. It is a logical and at the same time illogical result of the thoughts, so it is perhaps the aim of the book and play, to try and normalise this state of mind. It is also basically an attempt to fight prejudice and discrimination – hey, let´s look at what we have in common as human beings!


Now one of the things one wonders about is what influence uncertainty has on mental health. Firstly, on mental illness. Many people feel that behind the growing anxiety of individuals in modern society lies increased uncertainty or increased information about possible uncertainty, in a world that grows constantly larger, because we see wider, have access to more information with modern technology. Do you think this might be the case?


Yes, we know that the mind thinks 60-70 thousand thoughts every day and that´s a lot of thoughts. And we also know how pre-conditioned creatures of habit we are, homo sapiens, so I think it is self-evident that the more information you consume or have access to or use, the more, yes, you know about the external world, which increases uncertainty in your mind. And for many – the answer to mental health struggles is to temporarily scale things down, to live with certainty and safety. It is perhaps better to know less and simplify one´s life. In the last 10-20 years we have noticed this emphasis on mindfulness. And we who are middle aged, we notice that it takes less to make us happy, we become more grateful for our life and humbler, less outcome focused etc. So, I think this increased volume and access to information and especially the arrival of smart phones, has completely changed the way our brain functions. There are indications from research that our attention span is getting shorter and shorter, some say we are like the goldfish now, with an eight second attention span! So, the response to all of this is mindfulness and connecting to nature.


At the same time, we can say that the driving force behind all this information being thrust at us is the capitalist market environment. Of course it is a simplification, but it is one of the drivers. It is so hard to push back, and you can also see that it is always harder and harder for people to tolerate silence. You only need to visit a gym, to see that everyone is maximising sensory inputs. People have something in their ears, something in their eyes, the sensory input is maximised somehow, but not only in the gym, it´s wherever you go. I think the other thread in this is a disconnect of communication, of society. When you have separated yourself from your environment, created your own space, within a larger space, it becomes such a defragmentation, that I don´t think it is good for humanity, for us as humans somehow. Just to eat in the company of others is almost a rarity now! Everyone has the mobile phone open or is doing something, so this information and instruments have disconnected, unplugged the everyday, reality.


Héðinn Unnsteinsson.
Héðinn Unnsteinsson.

Interesting. But to another aspect of this. I have followed your writings and talks for a long time, and one of the things you have repeatedly mentioned is a concern you have about the ever- growing number of diagnoses within psychiatry over the past decades. – Just a thought – do you think this could be a response from psychiatry to uncertainty about the foundation and causes of the mental challenges people are struggling with? An attempt to change uncertainty into quantifiable risk. In a way like what one thinks about when one sees geologists on TV answering questions about the possibility of a new volcanic eruption near Reykjavík. They speak knowledgably and show graphs, but can´t hide the fact that they know little and can´t predict anything with certainty. So, might psychiatrists as a profession be a bit like those poor geologists?


That may be so, partly. There are many things that tie into this question. Regarding the connection between uncertainty and the multiplication of diagnoses, I think that may be part of the reason. I have been watching this development from 2005-6. When I worked at the WHO office, I started reading all sorts of writings connected to this topic, mainly expressing concern about this development. Then came the book of Allen Frances, Saving normal. So there the editor of DSM-IV was turning against the development of the manual. Many people I met on my travels for the WHO, many users and former users were militant in the discourse, talking about the multiplication of diagnoses as one of the big threats or developments of great concern within the mental health field. A lot of their discourse was more connected to big pharma and it´s need for dis-ease, the need for imbalance. And that psychiatrists and the whole mental health system were just victims in this constant need of the capital for imbalance. I was attracted to this discourse and started thinking about it. So, I read some of these books and papers, writings of people like Robert Whitaker and older writings like those of R.D. Laing. And this unbelievable multiplication of diagnoses was clear. And description of how new diagnoses were accepted into the DSM-III and onwards in a dubious way. It wasn´t objective or scientific at all, the way it was described. Experts sat around a table and voted on whether a disease should be included in the manual! This didn´t help trust the system! And also, how the DSM manual was marketed and sold. So, I´ve long held the belief that feeling bad is marketed by the pharmaceutical companies as diseases in the world of psychiatry. It is clear that there are certain core serious mental illnesses, but then increasingly one notices as an ex-user of the system and in layman conversations that everyone is claiming to have this or that diagnosis, often on an uncertain basis.


But here you are describing something different, something other than a need for certainty. A marketing drive, more than an attempt of a scholarly field to find certainty?


No, as I said earlier, there are I think many threads that connect to this. It isn´t just one driving force or explanation here, but there is certainly a push from capital and the pharmaceutical industry. We must put in an effort people say, nothing´s happened for 30 years and now we must find something new. People hold the kindle high, I´ve seen this in the new companies developing psychedelics, the big ones, doing phase 3 studies right now, with a lot of finance behind them. Entrepreneurs with loads of money wanting to be first, to bring “the solution” to a problem nobody has shifted for 30 years. This is one factor.


Another factor is possibly the one you mention, a need to reduce uncertainty. One more thing is control, power. One can look at the diagnostic system as an instrument of control. By diagnosing you are taking control, control over a state which is out of control and abnormal or full of suffering. You gain control of the narrative, the individual and for yourself, you now have a certain control over the environment. Then you put the individual on a medication after an interview, but all based on diagnostic criteria. Then, if it´s not successful, you rewind and reconsider the diagnosis. But it is all very subjective. That´s fine, the attempt, the effort is all good and well, as long as it is a good attempt, with noble aims. But sometimes it is as if a certain humanity is forgotten in all of this. Because the diagnostic system can also dehumanise, both psychiatrists/service providers and service users. Just because you have a cold, doesn´t mean that you are a cold. This is I think also a balance, that one has to keep in mind at all times. Are we losing humanity out of the system, through always dealing with diagnoses and labels? I´m not saying that psychiatrists are dehumanised, but the risk is there when the system is driven by diagnoses and the labels all based on them. So, diagnoses are an instrument of power, they are an instrument of control and also, I can totally buy that they are also a way to reduce uncertainty. You also definitely reduce uncertainty by taking control, through diagnostic labels and systems.


"There are indications from research that our attention span is getting shorter and shorter, some say we are like the goldfish now, with an eight second attention span! So, the response to all of this is mindfulness and connecting to nature."

If I asked those leading psychiatry, they would claim that they are taking control and reducing uncertainty to improve knowledge. That is, to be able to describe something you have to define and demarkate it. You have to know whether you are dealing with a Toyota Landcruiser or a Yaris, so the repair can be focused.


Yes, I understand this, but you are also dealing with a human being, people, with childhoods and traumas and innumerable other factors affecting the behavioural expression the system is facing at a moment of emotional instability for the individual. The sense, from my own experience and from listening to the stories of others, is that this can be forgotten. There is also the issue of time pressure, cost pressures etc. One thing to consider is how we best service those dealing with mood disorders, as an example. Is it best done with medication or something we have never tried? This humanistic approach, there is a wish for that, in a way people have been looking back in time. And there is a sense that the current system doesn´t handle its power carefully enough. It could do this for example by sharing it. The demand of users is about sharing of power, that´s where words like empowerment and recovery-focused services come from. And it is certainly something the systems have started integrating – only by paying lip service to it in the beginning, but yes, then it grows. Then one day we have recovery focused services for real, with co-workers with lived experiences. These things all need time to work.


And uncertainty?


Uncertainty, yes. This is a big part of the uncertainty, the diagnostic system, how much uncertainty you can delete with diagnoses. I often think the users are happier with the diagnoses now than in the past! One often hears people say they are super happy to get a diagnosis of ADHD. But the criticism on the diagnostic system is about the multiplication of diagnoses. The risk about all of this is that it starts taking over your self-image. You start introducing yourself or excusing yourself, with a sentence like „Hey, I have ADHD“, so you are using this diagnosis, which at its core is a subjective evaluation of a subjective state of mind. Yes, it can be an aid, and can justify something, but, and here I speak from own experience, it also makes it easier to give up, if you have a justification for your behaviour or feelings. Hey, I have this diagnosis, I am excused. So, it´s a double-edged sword.


But the point about understanding – a diagnosis is perhaps not only to reduce uncertainty, gain power, earn money, it is also about finding a story, a narrative that fits. Looking for a truth, but it is then an individual truth, not necessarily a more global truth?


I think there are many truths, many paths, many versions, no mental health challenges are ever quite the same, each has his own experience and personality which play a part.

Thank you for your time. □



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