Lingua patientis: new words for patient communication and history taking

Proper history taking has always been the essential first component of any patient assessment. Regrettably, many patients are not equipped with an optimal vocabulary with which to describe the nuances of their symptoms – not surprising given recent global geopolitical events with increasing numbers of displaced people. Even a first-language English speaker has an average 22,000–35,000 word vocabulary, predominantly acquired during their early healthy years and thus not honed through personal experience for conveying the subtleties of sickness. ¹ Although English is the commonly accepted lingua franca of science, English words often fail to adequately describe many symptoms (e.g. the indescribable epigastric rising sensation of temporal lobe seizures) or fail to reflect the duration, severity or complexity of a symptom spectrum.

The descriptive failings of the English language from the patient perspective are multiple. There are some symptoms or experiences for which no precise words exist. This is particularly true of sensations, such as odour perception. Although there is a multiplicity of words to describe colours, there are comparatively few to describe odours, which render difficult attempts to designate either the varying distinctive smells of bacterial infections or the details of an olfactory hallucination. Alternatively, there are some words that are simply overcommitted; for example, the word ‘pain’ is used to describe more than 20 different symptoms which may be acute, chronic, constant, intermittent, mild, severe, stabbing, squeezing, burning, cramping or crushing and which may arise from virtually any organ system. Other similarly overcommitted words include ‘rash’ and ‘dizzy’.

Reflecting frustration, patients (or families) occasionally create new words to convey the subtleties of their medical history. My first encounter with a patient created new word was over two decades ago when a man used the word ‘brenchy’ to describe a burnt, stench olfactory hallucination that he was experiencing because ‘there are no words to describe what I’ve got’. Within a month, an elderly woman, whose articulate wry sense of humour I always appreciated, used the words ‘stoolequency’ and ‘stooloosia’ to differentiate between diarrhoea as an increase in the frequency of bowel movements and diarrhoea as an increase in the looseness of stool. She then punctuated this display of linguistic innovation by playfully pitching her bottle of valproic acid at me, requesting a medication with more acceptable side-effects. Over the past 20 years, I have encountered a number of other patient-created words, more frequently invented by patients with sophisticated language skills rather than by the general patient population. Some of these spontaneously created new words include:

crushurting: pain, specifically the retrosternal crushing pain of myocardial ischaemia

This concept of patient-generated neologisms may even be adapted as a technique to improve detailed history taking. Recently, I have been asking patients (or their families) to deliberately create new words to communicate difficult-to-describe symptoms, and then to explain why they created these specific words, thereby forcing both patient and physician to think more methodically about symptom description. One of my favourite new words to have emerged from this exercise is ‘depralgesis’, which describes the self-perpetuating link between major depression and chronic pain, leading to a vicious cycle. This word was coined by a multi-lingual university-trained etymologist who suffered from both depression and chronic neuropathic pain. She complained that there were no words in any of her languages to describe the complexity of symptoms that she was experiencing. When I challenged her to invent such a word, she zealously undertook the task, inventing the word depralgesis. When she triumphantly expounded her new word to me, she described the process as ‘therapeutic and cathartic’ – finally, there was a word to describe how she felt. Examples of other words emerging from this process include:

famnesia: a memory disorder which has progressed to include the inability to recognise family members (dementia)

These neologisms are not a sign of pathology; they are, however, a sign of frustration, arising from the lack of precise words to describe symptomatology. ² People innately create these new words using blend-word or hybrid-word strategies commonly employed during word creation. ³ Significantly, these words are thus sometimes meaningfully transferable. For instance, I recently encountered a family searching for words to describe their father’s cluster of symptoms with early dementia. When I suggested the word memfusion to them they exclaimed ‘yes, that’s it! – that’s the combination cognition/confusion/memory problem that he is experiencing, and we don’t really know if memory problems are causing his confusion or if cognition problems are affecting his memory – it’s all a mess’.

Although medicine has created a comprehensive technical lexicon for physicians, we have failed to develop a patient-centric vocabulary (lingua patientis) that provides more accurate symptom description. Daily, our society is inventing new non-technical words (Brexit, crowdsource, photobomb, post-truth, twerk, yogacise), often for arguably less important entertainment and social media purposes. The dissemination and social networking of lingua patientis words might reduce patient communication confusion, enhance history taking and afford improved appreciation of disease impact on individual patients. The English language is renowned for its capacity for dynamic change and flexibility – we need to exploit this capacity for the benefit of our patients.