Diagnosis disappears - but what about the exhausted ones?
Evaluating a concept is not the same as questioning suffering
Are there mental psychiatric diagnoses? A pointed question that is once again topical because exhaustion disorder will disappear from the Swedish diagnostic register.
What the hell is this? And what does it mean for all the exhausted people who have collapsed, become bedridden and then registered as sick under diagnosis code F43.8A? Those who have burnt out, walked into the dreaded wall. What will happen to them now?
To answer that question, we need to go back to the origins of the diagnosis. In August Prize-winning psychiatrist Christian Rück's book ‘Unhappy in Paradise’ (2020), the story goes like this:
In the late 1990s, a researcher noticed that long-term sick leave and the diagnosis of depression were increasing in Sweden. He went to the grand old lady of Swedish psychiatry, the internationally pioneering depression professor Marie Åsberg. This couldn't be right, Åsberg thought - why would so many people suddenly become depressed?
The researchers convened a group and studied 100 civil servants on sick leave. Most of them had depression, but something was off. They thought they saw something else. A fatigue, stress intolerance more than depression.
A few years later, Åsberg and others were commissioned by the National Board of Health and Welfare to produce a report on how to tackle the increase in sick leave. The group proposed a new diagnosis: exhaustion disorder. Two years later, in 2005, the National Board of Health and Welfare adopted the idea. In the Swedish translation of the International Classification of Diseases (ICD), exhaustion disorder was added as a subgroup to F43.8 Other specified reactions to severe stress.
Exhaustion disorder is unique, because this is not how it usually happens. For new diagnoses to be created, good studies are needed on what distinguishes the condition from others, which has never really been presented for exhaustion disorder. The diagnosis only exists in Sweden. But nevertheless, it has become the most common code on sickness certificates to the Swedish Social Insurance Agency.
The problem with a diagnosis that only exists in one country, and that is not based on scientific evidence, is that it becomes difficult to research. This has also been the case with exhaustion. Initially it was thought that long sick leave was required, but now it is discouraged. There was a perception in the scientific community, which was passed on to patients, that something had changed biologically, broken down, in the brains of exhausted people. This could never be proven. There are few studies, and no clearly helpful treatment.
The diagnosis has therefore been criticised over the years by Swedish general practitioners who see the tired, sad and exhausted. Those who go through crisis reactions, deaths, divorces and difficult working conditions and sort of collapse.
This cannot be emphasised enough: questioning and evaluating diagnoses is not questioning suffering. Suffering is the only thing that is real. But the diagnoses themselves, the labels, exist because we create them. Doctors and psychologists interpret different symptoms and put them together to form a profile that they think rings something treatable.
Mental health diagnoses change with the times in a different way than physical diagnoses do, because they can never be diagnosed with blood tests or X-rays. And strong reactions to stress have always existed. In a fine text about the remarkable physician Ernst Westerlund, who gave his name to the fragrant potted plant Dr Westerlund, each new generation of doctors is encouraged to look backwards to understand their contemporaries.’
‘At the turn of the last century, the ‘miracle doctor’ Westerlund was the town doctor in Enköping, where people travelled from all over the country to see him. At that time, the diagnosis of neurasthenia, nervous weakness, was widespread and, like exhaustion disorder, it was more common among women in the upper classes than among labourers. Dr Westerlund became famous for his success in curing them.
With a keen interest in the patient's whole life, and by never questioning the symptoms, sufferers took a great liking to the doctor. His individualised treatments included activities such as caring for others, manual labour in the fields around the city or spending time in nature.
Ernst Westerlund was careful to emphasise that the symptoms were not imaginary, but he encouraged patients not to focus on them. ‘To rest is to do something else’ was one of his mottos. Coherence and meaning were important, and his ‘regimen therapy’ included not only routines around eating, sleeping and working, but also socialising with others. Westerlund is now seen as a leading figure in occupational therapy, and his methods are similar to what is known as third-wave CBT: ACT, acceptance commitment therapy, which, with its mindfulness ideas, has similarities with thousands of years of life advice from Buddhism.
Through her important work, the historian of ideas Karin Johannisson has taught us the word cultural diseases. Neurasthenia fell into oblivion, and other diagnoses took its place. When the now 86-year-old psychiatry professor Marie Åsberg is interviewed in the podcast The Last Pill, she says: ‘We still don't know what we should and would like to know about these diseases’, adding: ‘if they are diseases’.
No, what exactly is sick - is it nerves, society, patriarchy? We have no definite answers, and each individual has their own story, as Dr Westerlund saw.
Many people will be stressed, sad and tired in their lives, and today's doctors have to enter a diagnosis code in the medical record if you seek treatment. In the ICD manual, the chapter F43 Adjustment disorders and reaction to severe stress is close at hand, with, for example, 43.0 Acute stress reaction or 43.2 Adjustment disorder, which many will probably use instead.
A close relative of mine has been on long-term sick leave for periods of time over the years, she herself has described it as exhaustion. She was in ACT-style group therapy for exhaustion disorder, a treatment that was later discontinued because there was no scientific evidence. But it helped her. She bought a dog. She went for long walks. She took SSRIs and sleeping pills. She tended her houseplants, including a magnificent two-metre tall Dr Westerlund. Over the years, panic attacks, and especially health anxiety, crystallised, which she now understands and can manage. Now she has landed in a job she loves and recently expressed amazement at her work capacity. Memory, organisation, efficiency! ‘My brain isn't broken at all,’ she declared in amazement. What she had long thought of herself - as an exhausted person with a nervous system that would never be whole - turned out not to be true.
Many doctors have emphasised that the diagnosis of exhaustion disorder is too vague, and that treatment studies have therefore failed. Behind the diagnosis are a host of unique life stories and circumstances. The misnomer ‘mental illness’ is not helpful either. Behind the anxiety, fatigue, pain, depression, sleep problems, there is everything from severe psychiatric diagnoses to life with tough circumstances.
After 20 years of F43.8A, it's time for something new. Perhaps we can gain a more nuanced understanding of the suffering of the soul, and the many different ways to get back on track, in the spirit of Dr Westerlund.
I ask my previously exhausted friend about the fact that what she identified with will now disappear. ‘At first I thought: But that was real! What am I now?’. She says that it felt good to talk about herself as exhausted, as it was less stigmatised than, for example, depression, which can be interpreted as being too ambitious. ‘But’, she says after a while, “it's really just a word”.
