When patients hold back: Tactical choices and epistemic agency

Relationships between healthcare professionals and patients often involve an imbalance of power. Medical professionals are very often the gatekeepers of diagnosis, treatments and other support services. Patients on the other hand, typically lack the institutional markers of authority that come with medical qualifications and position. We’ve seen how epistemic injustices can occur in these settings as a result of the biases and prejudices of medical professionals who fail to appropriately recognise the reliability of their patients as sources of information or structural defects of healthcare systems. 

I’m interested in exploring the ways in which patients might respond. How do those seeking diagnosis or treatment navigate tricky relationships with medical professionals?  What epistemic strategies do patients develop? What forms can epistemic resistance take? One approach that is taken by some patients is a tactical one – being careful about what information they share and how they share it. U.S. based researcher Ann Neville-Jan describes her own relationships with doctors and other medical professionals in her long and often demoralising search for an explanation for her chronic pain and effective pain relief. 

Like many who experience chronic pain, Neville-Jan found herself fighting against the view that her pain was ‘just in her head’ – a perspective not uncommon amongst healthcare professionals who view patients with chronic pain as being unreliable in their understanding of the extent and cause of their own pain. As a researcher herself, Neville-Jan was able to play an active role in investigating her condition, leading to a breakthrough: she came across reports of the effectiveness of the use of the drug Paxil for pain relief. The treatment was effective and also provided an insight into the cause of her pain: a ‘hardwiring’ of pain signals in the brain, similar to phantom limb pain.   

Whilst she was successful in finding effective pain relief, Neville-Jan still had to navigate encounters with healthcare professionals. Given the prevailing “just in your head” attitude, Neville-Jan reasoned that if she shared the information regarding her treatment, healthcare professionals would be likely to appeal to psychosomatic interpretations that better fits their narrative, especially because Paxil could also be used to treat depression. The information that her pain does have a physical cause and is effectively manageable with Paxil may be deemed implausible or even unintelligible to some healthcare professionals. So as a result, she chose to limit what she tells them, holding back the information which she thinks they will be less open to. 

This is an example of a practice which feminist philosopher Kristie Dotson calls ‘testimonial smothering’ in which a speaker ‘truncates’ their testimony – withholds certain information, avoids presenting it in a particular way, or doesn’t share it at all – because they believe that their audience will not find it plausible or intelligible. This practice is often the result of bad experiences: attempts to share information where audiences were found to be incredulous or tended to misinterpret or resist the information being shared. Of course, the practice carries with it numerous negative consequences. It restricts what the speaker is able to share and means that they are unable to challenge the misconceptions of their audience. In Neville-Jan’s case it had specific drawbacks – she had important information regarding the cause and treatment of her pain which can help those involved in her care. She had done a significant amount of research and had knowledge about her condition which she was unable to share. In some sense, this limited her agency. Despite all her work in researching treatments, she was not able to fully engage in discussions about her health.

The problem is that holding back on sharing this information can be a sensible tactical choice for someone in Neville-Jan’s position. By presenting only what is viewed as plausible and intelligible, they ensure that they remain seen as a reliable and intelligible source of information in the eyes of medical professionals.

What does this kind of tactical choice tell us about what it means to have agency in the generation of knowledge? Neville-Jan can be seen as being coerced into holding back information because of the power that healthcare professionals have over her access to treatment. But the intentional negotiation of these relationships through her careful choice of words, suggests a resistant form of agency. She is neither a powerless victim of silencing nor wholly free, but she finds a way of having some control over her situation despite the difficult relationships she must navigate with healthcare professionals. She ‘bargains’ with an unjust system by sacrificing one good (being able to share all information about her treatment) for another (being seen as a reliable source of information). Even though it involves testimonial smothering, a practice of silencing, this is an expression of a resistant form of epistemic agency. 

Alice Moneypenny completed her PhD at Nottingham on safe spaces and epistemic practices, before becoming a Teaching Fellow. Her research focuses on epistemic virtues and vices in a non-ideal world, philosophy of education and epistemic agency.