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Illness happens amidst relationships

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There is a variety of ways of relating to illness and care. One common denominator amongst them is that many focus on the individual patient. But perhaps we should broaden the perspective and think of more or less all diseases as being an issue which always involves family and other people close to the patient?

Åsa Slotte’s philosophical dissertation can, without exaggeration, be described as ambitious. In her thesis, she has used two distinct ideas as her points of departure. The first idea was to provide a new perspective on healthcare, and to look at the concept of illness, within both psychiatric and somatic medicine, with new eyes. From this new viewpoint, what she calls an ethical concept of illness is central.

The other idea was to apply a narrative perspective to illness, which she has developed in order to explore the concept of anorexia as well as other diseases.

“When talking about medicine, the concept of diagnosis is important; what role a diagnosis plays, everything we associate with it, its many meanings for the individual and for society. Why do doctors and nurses need a diagnosis in order to move forward?”

Åsa Slotte standing on the Library Bridge in Turku.
Åsa Slotte. Photo: Marcus Prest.

Listening to the posing of these questions over a cup of coffee, they might sound rather stupid, as philosophers’ questions often tend to do. You might think ‘Of course doctors and nurses need a diagnosis in order to be able to move forward at all’ and find the question to be settled.

But like most relevant philosophical questions, this one continues to raise issues beyond that answer. Slotte does not question the need of diagnoses for doctors and nurses to be able to do their job, but she focusses on why it is that it seems so obvious that a concept such as a diagnosis is needed; that this says something about the entire way of thinking, an entire system and entire world of connections. So the question is not being asked to challenge the way things are, but to clarify our assumptions, since these are the very things that the often unsurveyed terrain of our thinking consists of.

“There has been quite a lot of discussion about diagnoses recently – in the last few years. To a large extent, this discussion has had a critical tone, which is often connected to the view that we over-diagnose ourselves. Questions linked to this are such as ‘What is illness?’, ‘When does something become recognised as a disease?’, ‘What is the difference between a life problem and an illness?’

What is an illness?

Such a question might concern the issue of ‘what is depression?’ When is depression an illness? When is it more an instance of low spirits rather than of clinical depression? What is the difference between being deeply sad and being depressed? And if depression can be linked to poverty and a generally vulnerable life situation – is it still to be considered as a matter of illness? That might be the case, but should we then broaden our view of sickness and health?

Another issue is shyness. When is shyness a kind of cautiousness, a fear of showing oneself, which can be described as a character trait, and when is it something that should be regarded with clinical eyes?

“In research, there are two different main approaches to these problems. One is the naturalistic, which claims that mental illnesses can also be identified and understood in an empirical, scientific way. It is possible to point out everything that ‘exists for real’, just as it’s possible to point out physical objects. If not directly with your finger, then with various instruments, and so on.”

“The other approach is social constructivism, which says that it is not possible to objectively define a mental illness. According to this perspective, mental illness is created by culture and society. This is seen by studying how social and historical processes change over time. My point is that the basic assumption of both these approaches is that biology makes the illness real.”

It is easy to see how biology makes the illness real in the naturalistic approach, but how does it do it in social constructivism?

“Both have the same basic idea of what real illness is based on; biology, but social constructivists simply do not agree with a large part of the naturalists’ definition of illnesses.  Whereas naturalism sees a biological basis in, for example, anorexia, social constructivism would claim that culture creates anorexia, not biology. Therefore, it is not a legitimate diagnosis. But they could perhaps agree on schizophrenia being an illness with a biological basis.” 

And what is the alternative way of regarding illness?

“I have tried to develop an alternative way of understanding why we need diagnoses. Instead of focussing on biology or culture, I’ve tried to look at the illness situation at the time of falling ill. And at what it means for everybody involved.”

Does this concern both physical and mental diseases, as far as these two categories can be separated?

“Yes, both. My main idea is to look at what happens when you begin to pay attention to something that will later be described as illness. You don’t necessarily know what to do, but the basic human impulse is to do something to help the person suffering.” 

“This includes concepts such as responsibility and caring. And the fundamental condition that we mean something to each other, we share such a life form. I think these caring impulses are the explanation of the emergence of all medicine, its concepts, all medical science and research, and care practices – we want to cure, help, do something to ease another person’s suffering. The concept of illness reflects a moral understanding.”

A pre-medical impulse

Åsa Slotte says that when looking historically at the concept of illness, we can find different ways of handling it. This is not the same thing as taking a social constructivist viewpoint on what is counted as illness and what is not, but a way of shedding light on the relational aspect of how the circumstance of being touched by the suffering of others has appeared in various times. 

For instance, ancient Egypt attempted to handle illness by means of religion and magic, and in China what is now called herbal medicine developed. 

“But the impulse to do something is pre-medical and brings together various caring phenomena. This shows that we as humans are creatures who have always had a relationship to mental and physical suffering among our fellow human beings.”

“So if we return to the concept of diagnosis, despite all the negative effects ascribed to it, such as it being stigmatising and so on, the basic thing after all is that a diagnosis is about understanding and getting words for how something is making life unbearable for a person, limiting some aspects of their life.”

Slotte gives social phobia or shyness as an example. If someone cannot choose a career they would otherwise want because of phobia or shyness, there might be reason to examine what lies behind this behaviour. The exact nature of the problems can be explored, as well as an alternative to attempting to find a psychiatric diagnosis, as this might be experienced as stigmatising. When studying such a case the question emerges as to why psychiatric illness is stigmatised – what does it say about the context, what kind of narrative is attached to ‘psychiatric illness’ to make it appear offensive? Offence is a social concept which implies that it does have relational relevance.

“A diagnosis means finding out what specific problems a person is suffering from, and these might fall within an established concept of illness. But diagnosing and getting a diagnosis does not automatically mean that the person will have an experience of being mentally ill; it might mean that the problems have been surveyed and the person has received a way of handling them, given that the care is good.”

“And then an alternative approach to the concept of diagnosis is to try and see how the person diagnosed is responsible for his or her own recovery and for the relationships in which the illness often happens.”

Diagnosis determines care

For the second part of her thesis, Slotte interviewed five anorexia patients, two parents, and a psychiatrist specialised in eating disorders.

The clearest common aspect that emerged in the interviews was the strong link between a diagnosis and the kind of care given, and the fact that society is built around the assumption that patients will receive a diagnosis, but also that the illness and care encompasses entire families.

“One central point in the interviews was also that if care and treatment are good, the people involved benefit from finding a way of understanding themselves better; understanding why they are the ones suffering from anorexia. When a narrative is established, the patients also acquire an increased feeling of responsibility for their own recovery.”

Four out of the five interviewed patients found their treatment to have been good. One of them thought her care had been insufficient. She was called a ‘chronic case’ and did not receive any treatment at all when she was at her worst. She had been deemed to be ‘too ill to be helped’.

“I was able to compare the different situations, and how the patients talked about their illness. The situation had been very difficult for the one patient who said she didn’t get any help. She was sad to have been called a chronic case; she experienced that description as permanently defining who she was.”

Slotte says that the interviews were very interesting to carry out, that she almost always experienced surprise following an interview. What she had been told shattered her ideas of what anorexia is and how a person with anorexia functions.

“Medical literature attempts to explain anorexia by means of biological, various psychological, and psycho-dynamic circumstances such as family and the social-cultural environment. The socio-cultural environment includes things like pictures of ‘thin people in the media’. A feminist version is that anorexia is created by capitalist patriarchal forces that uphold a fashion industry with a skinny female ideal.”

“This last aspect is interesting, as few of the interviewees found the slimness ideal to have anything to do with their anorexia. Some of them did see their illness as partly connected to some comments they had received, by anybody really, but that the comments were not to do with a ‘male gaze’, but rather with a culture in which we have value judgements about bodies starting in childhood.”

Few of the interviewees found the slimness ideal to have anything to do with their anorexia. Some of them did see their illness as partly connected to some comments they had received, by anybody really.

Self-awareness easily ignored

One question which emerged for Slotte was how to look at the way the patients themselves conceived of their illness. She made a distinction between what can be classified as scientific explanations and what existential problems were connected to the image of the illness, which resulted in a broadening of the anorexia concept. One of her observations was that the focus tends to be too strongly on finding explanations in terms of triggers – leading to the patient’s self-awareness being ignored.

“Several of the interviewees said that their treatment was too fixated on food, calories and body weight. What was lacking was an opportunity to talk about their lives, self-awareness and everyday experiences.”

The interviewed patients had fallen ill in various ways. Some were athletes, one had fallen ill after her parents’ tragic divorce, one had difficulties in relating to her body – she thought she had a ‘bimbo body’ and found it hard to relate to her femininity.

“This made me aware that anorexia can be connected to many different things. I realised that the patients’ existential problems can vary very much. Sometimes anorexia can be about the patients’ various experiences of not fitting into a gender category; they might experience themselves as being transgender and non-binary. Anorexia is perceived as a female illness, which is partly the case, but the view should be more nuanced, and we should be aware that men and non-binary persons can also suffer from it.”

Time for talking needed

As to shortcomings in the care, one important signal was the need to review the models applied, and ensure there is time for talking.

“When there is a story, a narrative perspective, the contact between the patient and the carer deepens. Only through discussions can the patients express the unique meaning of their anorexia. The situation is similar to that in cases of depression. Nobody would claim that all depressive illnesses are the same; you must find out how the patient views herself or himself in the world, what their closest relationships look like.”

The situation is similar to that in cases of depression. Nobody would claim that all depressive illnesses are the same; you must find out how the patient views herself or himself in the world, what their closest relationships look like.

“It’s impossible to understand mentally ill people without understanding the relational contexts. This, on the other hand, challenges the rules concerning the patient’s autonomy and integrity. But anorexia is a disease that is trying for the family and friends of the sufferer. Research is very focussed on the individual, but those who are mentally ill live in relationships with other people. As we all do. The entire family is affected when one of its members is ill, and the illness has emerged within the family context. This doesn’t mean that somebody in the family will have caused the illness, but that the illness does take place within the family context, which is true of all diseases, of course. And that is why those closest to the patient need information and tools for handling it.”

In the worst case of the five interviewed patients –  the one involving the young woman who experienced serious deficiencies in her care – the woman started recovering only when her family was involved, and the relationships within the family could be explored.

“In another case, the father initially found it very difficult to at all grasp the reality of his daughter’s illness. He regarded it as vanity and thought she simply had to start eating again. When he realised it was her way of handling her anxiety, father and daughter could communicate more easily and become emotionally closer to each other.”

When it comes to the relational aspect of diagnoses, Slotte thinks a diagnosis is something we should be in dialogue with. There is the possibility for change, for things to take on different expressions, for gaining control over certain patterns. The diagnosis is also a tool by means of which relatives come to understand why a person close to them behaves in the way he or she does, and it helps them to relate to the person who is ill.

Why treatment? About anorexia, diagnosis and moral understanding

“Varför vård? Om anorexi, diagnoser och moralisk förståelse”

In her doctoral thesis, Varför vård? Om anorexi, diagnoser och moralisk förståelse, Åsa Slotte shows that by observing a person’s moral reactions to another person’s mental suffering, problems or pain, we can find out how the thought of care emerges. Describing these reactions in terms of attention, sympathy, understanding, responsibility, and others, reveals the pre-medical idea which is the moral basis for our care practices and medical sciences.

Slotte formulates an ethical concept of illness, the aim of which is to point to the perceptions which are central for understanding the meaning of illness. This thought formulates a counter-proposal to the fixed views of illness that the dominant theories of social constructivism and naturalism have created.

For persons who are ill and those closest to them, this conceptual, philosophical discussion might help to illuminate the questions that immediately appear in a situation of illness. Slotte has interviewed anorexia patients, their family members and a doctor, and observed that the care and treatment given does not always meet the existential experiences and questions a patient has: What does my diagnosis mean exactly? Why do I experience my body like this? Will I ever recover? Will my anxiety disappear if I hurt myself? How can I understand my child? These interviews have resulted in a new idea of the patient’s personal story being a constituent part, a building block, of the actual illness. The thesis therefore suggests that the story should be given a more central role in eating disorder treatment, which can be realised by health professionals being more open to listening to the patients. The role of the diagnosis can be, for example, to make the patients take responsibility for their own recovery, but also to forgive another person for what the illness has deprived them of. The interviews are based on the idea to make philosophy out of the experiences of illness that people suffer from, here and now.