As a young woman growing up in a small town in New Zealand, my educational and career choices were somewhat constrained. Not for me the push to become a medical practitioner, a lawyer, a scientist. No, I was encouraged to consider nursing or teaching. The subjects available to me did not include metalworking, woodworking, technical drawing (that was for boys, until my friend Tania challenged it!). I got to take shorthand, typing, home economics and sewing instead.
Stereotypes certainly prevailed and still influence how I am treated in the world.
When it comes to pain there is plenty of research confirming the higher prevalence of chronic pain in females (e.g. Bimpong et al., 2022; Camilloni et al., 2021; Yong et al., 2022). There’s also plenty of research showing that women seeking help for their pain receive invalidating responses, undertreatment and marginalisation (Hintz, 2023; Rice et al., 2024; Westergarden et al., 2021) whether related to ‘women’s issues’ or not. If you’re a woman, chances are high you will experience discrimination when you seek help for your pain whether it’s in your knee (Moretti et al., 2022); migraine (Rosendale et al., 2022); widespread body pain (Westergarden et al., 2021) or even low back pain (Prego-Jimenez et al., 2022). If you’re an older woman you’ve definitely experienced gender bias in your healthcare treatment simply because it was only recently females were included in pharmacology trials – and even if females were included in drug trials, results weren’t analysed in terms of sex (it was only in 1993 that the US FDA rescinded a policy from 1977 that banned most women from participating in drug trials – see here). In other words, while females weren’t included in drug trials because ‘female’, results were combined with male data as if females process drugs the same way. Can you have it both ways? Apparently so.
To get a better feel for what it’s like to be a woman living with pain, I’ll use qualitative research. Qualitative research is not intended to generalise to other samples or populations. It’s intended to deeply and richly understand a phenomenon, often follows a process of constructing meaning between the researcher and participant, makes room for ‘bias’ (because we can’t eliminate bias anyway) instead openly declares the lenses brought to the analysis. The reader needs to engage with the findings to determine how they apply in their context. Transparency about who you are as a researcher is called reflexivity and it helps if you as a reader are also reflexive.
Hintz (2023) carried out a meta-synthesis of 82 qualitative studies of patient interactions with healthcare providers. Participants were female, living with chronic overlapping pain conditions (COPC), and studies examined experiences of communicating with medical providers about their problems. In general, the studies didn’t provide much demographic data and most included female, white, educated and heterosexual participants. Hintz describes the process of selection, data abstraction and synthesis in reasonable detail, using a process described by France et al (2014). The author identifies that she is female, lives with a COPC, and studies patient-provider communication and this work was carried out as part of her dissertation focusing on developing measures of ‘disenfranchising talk in the context of female COPC patients’ negative experiences with providers.’ The study was not funded, and was conducted in a US University Department of Communications.
What did she find? She identified three main concepts: (1) Functions of disenfranchising talk (discrediting, silencing and stereotyping); (2) Effects of disenfranchising talk (harming agency, credibility, access and perceptions of the relationship); and (3) Responses to disenfranchising talk (submitting, critiquing and resisting).
Functions of disenfranchising talk – over 60% of the studies described disenfranchisement, or what the talk accomplished during the interaction. In other words, this type of interaction functioned to discredit the severity and experience of people, including doubting the existence of pain or the diagnosis (that fibromyalgia is not a thing, as I was told by one doctor); or that there is ‘nothing wrong’ and going on to doubt the severity or impact of pain on the person’s life (‘there is no cure for being a woman’, as my daughter was told and handed a paracetamol when she went to ED for help). As a result and in practice, women were silenced both by the provider preventing or discouraging talk either explicitly or by body language (tapping fingers, avoiding eye contact). Stereotyping was also identified with women being viewed as ‘melodramatic’ or ‘histrionic’, advised to lose weight, exercise more, wanting attention, or seeking drugs. Accusations of malingering were supported by the lack of positive diagnostic tests (blood tests, radiological imaging) with some describing greater invalidation once they had a diagnosis.
Effects of disenfranchising talk – participants report feeling constrained about what they can describe, and to whom, leading to isolation and withdrawing from friends and family. They also felt their words were discredited with providers questioning their moral character, eroding their self-esteem and confidence and leading to self doubt, and harmed their access to care, support and resources. Family members withdraw support, employers withdraw support, and at times even denied disability benefits and workplace accommodations because of what Hintz calls ‘codification of disbelief in medical records’. Unsurprisingly, these negative encounters had a significant impact on the way patients viewed their relationship with providers, losing faith and trust in their clinicians.
Responses to disenfranchising talk – people with COPC then responded by submitting and obeying, or being ‘the good patient’, critiquing clinicians (often by using sarcasm), and resisting. Resisting involved self advocacy, connecting with others, and researching. Resisting and self advocating could backfire with some participants describing being ‘fired’ from a clinic for noncompliance.
Hintz goes on to discuss sociological implications of these findings – that stereotypes and gendered expectations affect healthcare interactions, that the questioning and invalidation may have led to less funding for COPCs, perhaps getting in the way of meaningful measurement – just how many people experience these problems? What is the impact on health, social contribution, economic contributions? She consider the effect of these patterns of disenfranchisement on patient-centred communication. Given patient-centred communication is based on both parties sharing an understanding of the health problem, where patients feel invalidated and unheard, clinicians may not hear the problems and take them seriously, and a shared problem solving space is not developed.
Very briefly, I want to add another layer to this disenfranchisement analysis, and that is the effect of age. Westwood (2023) explores older women’s experiences of becoming ‘invisible’ as they age in a paper “It’s the not being seen that is most tiresome”: Older women, invisibility and social (in)justice. Her paper identifies five forms of invisibility: (a) being under-seen/mis-seen in the media; (b) being mis-seen as objects of sexual undesirability; (c) being “ignored” in consumer, social, and public spaces; (d) being “grandmotherized,” that is, seen only through the lens of (often incorrectly) presumed grandmotherhood; (e) being patronized and erroneously assumed to be incompetent.
Older women experiencing increased pain associated with menopause (see last week’s post) may not have their pain taken seriously, may not feel they can talk about their pain given a lifetime of being stigmatised (see Rice, et al., 2024), and consequently suffer significant impacts on top of the effect of pain on daily life (Boring et al., 2024).
Health professionals, we can do better. We must do better. And we certainly cannot think that a one size fits all approach to helping people live with pain will work especially in this group of people. Remember, I am one of them. More on what we can do better coming in future posts.
Bimpong, K., Thomson, K., Mcnamara, C. L., Balaj, M., Akhter, N., Bambra, C., & Todd, A. (2022). The Gender Pain Gap: gender inequalities in pain across 19 European countries. Scandinavian journal of public health, 50(2), 287-294.
Camilloni, A., Nati, G., Maggiolini, P., Romanelli, A., Carbone, G., Giannarelli, D., … & Latina, R. (2021). Chronic non-cancer pain in primary care: an Italiancross-sectional study. Signa Vitae, 17(2), 54-62.
France, E., Ring, N., Thomas, R., Noyes, J., Maxwell, M., & Jepson, R. (2014). A methodological systematic review of what’s wrong with metaethnography reporting. BMC Medical Research Methodology, 14(1), 1–16. https://doi.org/10.1186/1471-2288-14-119
Hintz, E. A. (2023). “It’s All in Your Head”: A Meta-Synthesis of Qualitative Research About Disenfranchising Talk Experienced by Female Patients with Chronic Overlapping Pain Conditions. Health Commun, 38(11), 2501-2515. https://doi.org/10.1080/10410236.2022.2081046
Moretti, B., Spinarelli, A., Varrassi, G., Massari, L., Gigante, A., Iolascon, G., … & Moretti, A. M. (2022). Influence of sex and gender on the management of late-stage knee osteoarthritis. Musculoskeletal Surgery, 106(4), 457-467.
Prego-Jimenez, S., Pereda-Pereda, E., Perez-Tejada, J., Aliri, J., Goni-Balentziaga, O, & Labaka, A. (2022). The Impact of Sexism and Gender Stereotypes on the Legitimization of Lower Back Pain. Pain management nursing.12 p18-25.
Rice, K., Connoy, L., & Webster, F. (2024). Gendered Worlds of Pain: Women, Marginalization, and Chronic Pain. J Pain, 25(11), 104626. https://doi.org/10.1016/j.jpain.2024.104626
Rosendale, N., Guterman, E. L., Obedin-Maliver, J., Flentje, A., Capriotti, M. R., Lubensky, M. E., & Lunn, M. R. (2022). Migraine, Migraine Disability, Trauma, and Discrimination in Sexual and Gender Minority Individuals. Neurology, 99(14), e1549-e1559. https://doi.org/10.1212/WNL.0000000000200941
Westergarden, M., Aili, K., & Larsson, I. (2021). “Moving between living in the shadow of pain and living a life with the pain in the shadows” – women’s experiences of daily life with chronic widespread pain: a qualitative study. Int J Qual Stud Health Well-being, 16(1), 1926057. https://doi.org/10.1080/17482631.2021.1926057
Westwood, S. (2023). “It’s the not being seen that is most tiresome”: Older women, invisibility and social (in)justice. J Women Aging, 35(6), 557-572. https://doi.org/10.1080/08952841.2023.2197658
Yong, R. J., Mullins, P. M., & Bhattacharyya, N. (2022). Prevalence of chronic pain among adults in the United States. Pain, 163(2), e328-e332.