A Painful Metaphor
Have you ever experienced stabbing pains in your stomach? Or perhaps you have felt a wringing or burning sensation in your abdomen? Have you described yourself as feeling 'sick as a dog' or prefer to use the term 'under the weather'? And how bad is the weather anyway?
We rely on language to communicate our subjective felt experiences of illness and pain, however, we rarely consider how the language we use could negatively impact our diagnosis. Yet for doctors, who see hundreds of patients a week, the variety of ways in which people describe pain poses a very real barrier towards effective treatment. Not only do people describe similar sensations differently, but also doctors come to their practice with their own language biases and conventions.
We rely on language to communicate our subjective felt experiences of illness and pain, however, we rarely consider how the language we use could negatively impact our diagnosis.
This miscommunication is more than a fascinating theoretical conundrum, it has real life consequences as has been shown in a recent study conducted by Stella Bullo from Manchester Metropolitan University on women with endometriosis. At present, the average time to correct diagnosis of this oft-debilitating condition runs between 7-9 years globally and 8 years in the UK. This is a significant delay that can exacerbate symptoms and impair quality of life. Bullo et al. posit that language may play a critical role in this delay. They surveyed 131 women with endometriosis about the difficulties they had faced talking about their pain with doctors prior to being diagnosed. The study found that most women questioned felt discouraged when communicating their feelings to their practitioners, often reporting that they felt 'unheard' and 'dismissed.' When asked about their language choices, many reported using elaborate metaphorical pain descriptors related to violence or burning sensations. However, when doctors were asked about diagnosing endometriosis, they reported associating its symptoms more easily with words such as “cramping”.
Several studies examining primary care for endometriosis in the UK have reported similar concerns about language as a factor in prolonging diagnosis. A cross-sectional study conducted by Vishalli Ghai et al “identified medical and psychosocial factors” that may contribute to a delay. These included dynamics such as 'normalization of pain and attitudes of health professionals.'
It is important to remember that the diagnostic procedure, especially for conditions with a range of symptoms such as endometriosis, is far from straightforward. GP considerations are more complex than simply lack of awareness, argue Sharon Dixon et al. in the British Journal of General Practice. “The unknowns surrounding endometriosis matter to GPs. Further research and tailored resources for primary care, where women present with undifferentiated symptoms, are needed,” they conclude. Ghai et al’s study calls for interdisciplinary work in order to devise appropriate tools for pain communication, while Bullo et al highlight that the numeric scales some doctors use in an attempt to overcome linguistic hurdles are not always useful since patients find it difficult to translate the depth of their pain and its impact on their lives into a number. They suggested that patients might benefit from a visual tool.
While these studies and the issues they flag up are critical, their conclusions do not come as a great surprise. For many women, feeling discouraged or dismissed by your doctor is a familiar experience when seeking advice onhealth issues, whether it is endometriosis, adenomyosis, various female cancers, and, of course, menopause.
Undoubtedly, some of the delay to diagnosis is bound up in sociocultural issues, with women inclined towards self-deprecation, minimizing their pain, and soldering on. When combined with a culture of secrecy or taboo, this exacerbates the difficulty doctors face making successful diagnoses, and that patients face receiving the best treatment. For example, in 2018, a survey conducted by Public Health England found that women do not report serious reproductive health symptoms, with more than 50% of those who had suffered symptoms such as those related to menopause, preferring not to seek help for fear of discrimination or humiliation. A Yale University review of insurance claims in the USA from 2018 showed that from more than 500,000 women in various stages of menopause only 60 percent seek medical attention, and nearly three-quarters of them are left untreated. The State of Menopause Study, conducted in the USA in 2021 showed that this situation continues despite rising awareness of menopause, with many women reporting that they were not treating their menopause. Even more alarmingly, a study conducted by the British Medical Association in 2020 revealed a culture of taboo within the medical profession itself. It found that many women physicians going through menopause were choosing to reduce their hours, moving to lower paid roles or retiring early from medicine due to sexism. Of the 2000 female doctors questioned only 16% had discussed their menopause symptoms with their manager due to fears of being ridiculed.
women do not report serious reproductive health symptoms, with more than 50% of those who had suffered symptoms such as those related to menopause, preferring not to seek help for fear of discrimination or humiliation.
These studies add to the slew of existing evidence that there is a widespread lack of preparation and awareness of women's health issues among healthcare professionals that has lasting consequences beyond diagnostic delay. Medical language throughout society – both for patients and doctors – is hindered by taboos and geared toward prejudices that ultimately have financial, social, psychological, and physical consequences for all involved. As Ghai et al. conclude, there is an evident need for “changes in clinician education and public awareness to decrease long-term morbidity and complications,” but this conclusion needs to be extrapolated well beyond untreated endometriosis to all women’s health issues. Another painful metaphor for a systemic problem.
Sources
https://www.tandfonline.com/doi/abs/10.1080/0167482X.2019.1678022?journalCode=ipob20
https://www.frontiersin.org/articles/10.3389/fgwh.2021.764693/full
https://pubmed.ncbi.nlm.nih.gov/31328629/
https://pubmed.ncbi.nlm.nih.gov/23847114/
https://www.sciencedirect.com/science/article/abs/pii/S0738399121006431
https://www.sciencedirect.com/science/article/abs/pii/S0738399121006431
https://journals.sagepub.com/doi/10.1177/1363459318817943