Naming and re-naming (health) conditions

by Katrine Kehlet Bechsgaard

When a health condition is identified and named by medical authorities, it is constructed as a disease. So, when a person is displaying certain symptoms, the disease name can be applied, and when physicians (and in some cases laypeople as well) encounter the name of the disease, they will know what is behind the name. As is the case with naming in general, the act of naming health conditions makes it possible to distinguish the condition in question from other conditions.

However, disease names can be controversial because of the stigma associated with some health conditions, and sometimes this leads to them being changed over time, just like connotations sometimes change. Also, the categorization of symptoms evolves, and conditions being identified and named as diseases sometimes change status away from being pathologized.

Guidelines for naming diseases

The question of how diseases are named came into focus in 2020, when a new virus entered the world stage. The official name of the virus was ‘severe acute respiratory syndrome coronavirus 2’ (‘SARS-CoV-2’), while the disease that the virus lead to was named ‘coronavirus disease’ (‘COVID-19’). But the World Health Organization (WHO) decided not to use the name ‘SARS’ due to the concern that it might create unnecessary fear because of the SARS outbreak in 2013. This decision was in accordance with the WHO’s guidelines for the naming of diseases, which suggests avoiding geographic locations (such as in ‘Spanish flu’), people’s names (such as in ‘Creutzfeldt-Jakob disease’), species of animals (such as ‘swine flu’), and terms that incite undue fear (such as ‘fatal’ and ‘death’).

Despite these guidelines, when a number of covid variants came along, the need to distinguish them from each other followed, and geographic locations came into play. The variants were initially referred to as for example ‘the Brazilian variant’ and ‘the Indian variant’, until a new naming system using letters of the Greek alphabet was introduced by the WHO in 2021 in order to avoid stigmatization of countries detecting and reporting new variants.

The many names of ADHD

While COVID-19 is an example of a new disease being identified and named, other health conditions have changed both names and connotations over time, as well as switched between being and not being pathologized. An example is ‘ADHD’, which was described in the early 20th century under the name ‘MBD’ (‘Minimal Brain Dysfunction’). This became a psychiatric diagnosis in the 1960’s. In the 1980’s, ‘ADD’ became the name used in the United States, while ‘Hyperkinetic Disorder’ was used in the United Kingdom, and the Nordic countries used the name ‘DAMP’ (‘Deficits in Attention, Motor Control and Perception’). Since around 2000, ‘ADHD’ (‘Attention Deficit Hyperactivity Disorder’) has been used internationally (even though some say that the name is misleading, arguing that there is no actual deficit of attention). 

The question of pathologizing this and similar conditions, however, has been brought up in recent years, as the ‘neurodiversity’ movement has emerged (embracing neurological differences and aiming to increase acceptance of all neurotypes). This has brought along a new focus on names and language in general used for such conditions; for example, in relation to autism, the question of person-first language (‘person with autism’) versus identity-first language (‘autistic person’). Even the term ‘diagnosis’ related to neurological conditions such as ADHD and autism is being questioned. In a Danish context, ‘having a diagnosis’ has in some cases become synonymous with ‘having ADHD or autism’, which makes the development of the term ‘diagnosis’ interesting in its own right.

Names for minority conditions and identities

These examples, of various names for COVID-19 and ADHD, give an idea of the significance of naming (health) conditions, as well as the fact that there is a connection between language and the way we think about the world (as described by the concepts of linguistic determinism and linguistic relativity). They also illustrate the fact that these names and their connotations can change over time.

Questions of the societal causes and effects of the way that both health conditions and other minority identities are named, or labeled, (based on for example sexuality and ethnicity) are the focus of a new research project, supported by the Carlsberg Foundation, entitled The Power of Labels: The Meaning and Use of Names for Identities and Conditions. With this study I hope to contribute with new insights into the nature of labels used for such conditions and identities as well as the background, consequences and development of labeling minority groups in society. 

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