What is illness?

Everyone has things about themselves that they (or others) would like to be different. Some are congenital, some acquired. Some are considered to be part of our character, our physique, or our personality; others as sins, moral or physical weaknesses, or as illnesses. In certain circumstances, synonyms for illness, such as ‘sickness’ or ‘mental disorder’, are used, but these have similar implications. There is much debate in popular media about whether specific conditions are illnesses or not, and whether or how they should be treated. What light do these debates throw on why we define a condition as illness, and what are the implications of this decision?

I have argued previously that we should distinguish between disease categories, empirical statements similar to biological taxonomy, and illness, an evaluative judgement that a condition is undesirable. Since they are tools devised by health professionals most disease categories are negatively evaluated as illnesses, and so Hume’s famous facts/values confusion often appears; terms like treatment, disorder, and abnormality are fact/values portmanteaux; they look like factual statements but have an evaluative element.

Disputed physical conditions

Some medical authorities suggest ‘bat ears’ should be ‘corrected’ (note the covert evaluation) because children with them may be bullied and teased, but some people like them. The actor Russell Tovey delights in his: ‘Someone said to me, “If you want to make it in Hollywood, you’ve got to pin your ears back.” And I remember being like, “They’re my trademark!” I’ve never had an issue with my ears’. Fans like them too. Similarly people with other unusual physical features, such as intersex, increasingly reject negative evaluation of their condition.

One way bat ears can be ‘corrected’ is by cosmetic surgery. Similarly nasal features, which can be categorised objectively — tip irregularity/asymmetry, a crooked middle-third of the nose, or a dorsal hump — are evaluated as ‘aesthetic abnormalities’ ‘correctable’ by plastic surgery. Generally the NHS has not funded these treatments, making an implicit distinction between needs (reshaping a hare-lip) and wants (reshaping a big nose).

Being abnormal

These examples illustrate that conditions are often seen as illnesses because they deviate from a norm. This norm may be an ideal of what human beings should be like, so that anything too different is considered abnormal. Youth may be seen as part of being normal, so cosmetic surgery is used to reverse the effects of ageing. Hormone replacement therapy (HRT) is similarly justified, providing ‘additional energy and sense of well-being almost like a fountain of youth’. One HRT pioneer described the menopause as a deficiency state analogous to myxoedema, implying that all post-menopausal women should have HRT.

Or the norm may be statistical, as with ear protrusion, which is a continuous variable. Those at both extremes are statistically abnormal, but we ‘treat’ only one tail of the distribution; we don’t make very flat ears stick out more.

Psychological conditions

I’ve started with physical conditions because the issue is the boundaries of illness, not the status of mental illness, but most disputed conditions are psychological, and disputed physical conditions (such as bat ears and big noses) are usually treated medically for psychological not physiological reasons. Controversial psychological conditions include aspects of sexuality, neuro-atypical conditions (for example, Asperger’s syndrome, attention deficit hyperactivity disorder [ADHD], and dyslexia), depression, and addictions.

As with physical conditions, sometimes the dispute is whether these are problems or merely a different way of being human. Over the last century male homosexuality has been categorised as a crime, a sin, an illness, or part of normal human variation accepted by same sex marriage Acts. Recently people with Asperger’s syndrome have argued similarly that their mode of mental functioning has benefits as well as drawbacks, and is a disability only because society makes it so.

Where to draw the line?

For some, depression is a severe, life-threatening condition that few would argue should not be treated medically, but there is a continuum between this major depression and normal sadness. Everyone has days when they feel less cheerful, and some have more than others. It would be strange not to feel sad after the death of a close friend or relative or the end of a relationship. Views on where on this continuum the boundary of illness should be drawn have changed. In the 1990s, UK GPs were criticised for ‘missing depression’, while 20 years later they were being accused of medicalising unhappiness.

One possible reason for this change was the advent of safer drugs with fewer unwanted effects than previous treatments, making doctors more willing to prescribe and patients more willing to take medication; both perhaps encouraged by vigorous advertising, sometimes criticised as ‘disease mongering’.

Secondary gain as primary purpose

Defining a condition as an illness implies that it is outside our control, so if it prevents us working or fulfilling social obligations that’s not our fault. Clinicians issue certificates excusing people from work or other responsibilities on the grounds of illness. Sometimes illness excuses acts as well as omissions, varying from angry words due to a headache to diminished responsibility as a defence against homicide. Sometimes it entitles us to benefits in cash or in kind.

Often this seems reasonable. We generally do not choose to break an arm or have a heart attack, so although we do have some control over the risk of these events, generally it seems fair that we should not be blamed for what they prevent us doing, and be supported if they stop us working. But sometimes avoiding responsibility or obtaining benefits seems to be the main reason for defining a condition as an illness.

For example, should President Clinton have been condemned as a sexual predator or excused as a ‘sex addict’? Is dyslexia, as some suggest, merely a socially acceptable excuse for lack of intellectual ability? Empirical data shows that dyslexia can be distinguished from general lack of intellectual ability, but does this mean it should be evaluated differently, and if so when? People with dyslexia get special arrangements in examinations, but what is a ‘reasonable adjustment’? Should proofreaders be excused mistakes because they are dyslexic, or is this a step towards the ‘generalised incompetence disorder’ that excuses all errors in the fictional medocracy of Gelbetia visited by the BBC’s Brian Gulliver?

ADHD raises similar issues. Children who could not sit still, pay attention in class, or acted without thinking were seen as ‘naughty’ until scientists found a difference in their brain chemistry, and developed drugs that made these children behave ‘more normally’ (another fact/value portmanteau). Some politically right-wing commentators suggest this is medicalisation of bad behaviour, while others criticise the increased use of ADHD drugs as ‘disease mongering’.

Taking emotional support animals (ESA) on airlines raises similar issues. If guide dogs for blind people can fly at no extra charge, why not dogs that help people deal with anxiety, phobias, or depression? Between 2002 and 2019, the number of ESA certificates issued rose twelve-fold, and some suggested that people obtained them to avoid paying for their pet’s flights or so pets could travel in the cabin rather than in the hold.

Substance addictions

There is no argument that substance addictions are undesirable; the debate is rather whether they should be seen as illness, sin, or crime. There is a genetic predisposition, presumably related to brain biochemistry, so biomedical treatment seems reasonable, although in practice drugs play a small part in treatment and psychological approaches seem more effective. But another approach to addiction is Alcoholics Anonymous’s 12-step programme, based on taking responsibility, acknowledging one’s faults, one’s powerlessness, and seeking help from a ‘higher power’; a paradigm of sin and repentance rather than illness. Also, possessing some addictive drugs is a crime. Thus, someone with an addiction may be treated as being ill, attend a group drawing on theological ideas, or be punished as a criminal.

Conclusions

So what can we learn from looking at these controversial conditions?

The main point is that our view of what constitutes an illness is socially determined and based on value judgements, not scientific facts. Mayes summarised this clearly regarding ADHD: ‘… where the boundary between ADHD and typical childhood behaviour is located is ultimately a political and social choice, not a scientific one. No amount of scientific research can resolve this question for us.’ The same applies to all the conditions discussed above and indeed to all illnesses, although in most cases society is not divided.

It follows that while clinicians have expertise in placing a situation into a diagnostic category and hence what medical or psychological treatments are relevant, they have no particular expertise in deciding whether that condition is an illness or whether treatment is appropriate.

Clinicians need to be aware that health care can be used to reinforce oppressive social norms. Gross examples, like Nazi eugenics and Soviet psychiatry, are easy to spot, but less obvious cases may not be questioned, particularly if the person with the condition wants it changed because they have internalised the negative social view of their condition (self-oppression).

Finally, society needs to distinguish four issues:

1. Can biomedical intervention change a situation?

2. Is that change desirable?

3. Is the individual responsible for the situation?

4. What excusing and benefits are appropriate?

Although often related by circumstance, these issues are not logically dependent on each other. Assuming they are can lead to inappropriate practices.