Pain Testimonies, Testimonial Injustice, and the Burden of Trust

For years, science writer Abby Norman reported to doctors that sexual intercourse ached “like a dull pinch that resonated to my pelvis.” Norman suffered from endometriosis, a chronic pain condition triggered by uterine-like cells growing outside of the womb. Like other chronic pain conditions, endometriosis is difficult to diagnose. But according to her 2018 book Ask Me About My Uterus: A Quest to Make Doctors Believe in Women’s Pain, Norman could not get her doctors to acknowledge her pain—until her boyfriend accompanied her to a doctor’s appointment and expressed his frustration. “Becoming a disappointment to a man,” she writes, “seemed to do the trick.” Studies have shown that women and people of color are more likely to develop chronic pain conditions, and are more likely to have their pain reports doubted.

The subjectivity of chronic pain makes pain testimonies a vital epistemic source, but only if the testimonial exchange is performed successfully. As Elizabeth Fricker notes in her 2007 paper “Second-Hand Knowledge,” there is a gap between a speaker testifying that P and a hearer accepting P. In a successful testimonial exchange, trust bridges this gap. In testifying that I feel pain, a patient offers to a healthcare provider the opportunity to form the belief, that the patient is in pain. However, for the testimonial exchange to be successful, the healthcare provider must trust the patient as a knower and, as a result, accept the particular testimony. Often a testimony’s trustworthiness is constructed by assessing the speaker’s sincerity and competency. This process is not a precise science. Indeed, the interpretation of trustworthiness is typically an automatic cognitive process that relies on heuristics about whether someone is trustworthy.

Although heuristics provide useful mental shortcuts, they are also vulnerable to bias. Like the interpretation of trustworthiness, evoking an implicit attitude or prejudicial stereotype is also an automatic cognitive process— but one that can stop the testimonial exchange halfway, undermining or entirely blocking trust. The speaker may express that she is suffering pain, but the biased hearer can be prevented from appropriately recognizing the content and force of the pain testimony. The healthcare provider can fail to accept the testimony, take the pain testimony less seriously, or doubt the pain testimony all together. In so doing, the healthcare provider unjustly disrespects the credibility of the patient, wronging the patient in her capacity as a knower of her own bodily experience and robbing the patient the opportunity to share her pain in a testimonial exchange. Miranda Fricker describes a unsuccessful testimonial exchange due to prejudicial bias as an act of testimonial injustice. With chronic pain, testimonial injustices can also lead to an unjust delay in care.

Testimonial injustice for pain is uniquely harmful, for patients have a distinct authority in relation to their own pain. “What can I know if I can’t know what I am feeling in my own body?” feminist scholar Susan Wendell writes. “How can I remain connected to a world that denies I am in pain, or dizzy, or nauseated when I myself cannot deny that I am?” Unjustly doubting the pain testimonies of women and racial minorities results in the undertreatment of pain in these already marginalized groups. Members who suffer chronic pain can thus be understood as bearing a double burden, according to medical researchers Päivi Juuso, Lisa Skär, Malin Olsson, and Siv Söderberg: “living with an aggressive, unpredictable pain and being doubted by others in relation to the invisible pain.”

In presenting themselves as trustworthy with regard to their particular pain testimony, women and racial minorities who are also chronic-pain patients are often aware of the varied ways in which their level of trustworthiness can be interpreted. They are aware of the credibility deficit their social identity suffers. During a pain testimonial exchange, chronic pain patients can experience a double consciousness, so to speak—a “sense of always looking at one’s self through the eyes of others,” as W.E.B. Du Bois wrote.

Medicine seeks to relieve pain and suffering. It is this goal that prompts the testimonial exchange, with the chronic pain patient stating what is wrong so the healthcare provider can then treat or manage the problem. But seeking treatment is a particularly charged moment for a testifying subject, because she seeks to be trusted about something that only she is privy to. “A desire to avoid ‘pervasive distrust’ may be what really matters to persons living with pain, as they strive for their claims to be considered credible and their character considered trustworthy,” writes bioethical researchers Daniel Buchman, Anita Ho, and Daniel Goldberg. To secure the trust of the healthcare provider, chronic pain patients may use strategies of social performance to seem more convincing, such as downplaying the testified pain experience to present her testimony as more credible or trustworthy.

For example, consider a recent Abbvie commercial for the drug Orilissa, which helps treat endometriosis pain. In the commercial, a clinician asks a patient, “What seems to be the problem?” The female patient responds, “Just some cramps.” From behind the female patient stands a woman who looks identical to the patient,  voicing the patient’s thoughts: Hold on, say it is like stabbing knives and sometimes I have to call out from work. But she doesn’t say anything further. Aware that women’s pain testimonies are often dismissed as emotional or catastrophic, the female patient counteracts this potential prejudice by presenting a testimony that is absent of any cues that could be interpreted as being too emotional or exaggerating.

There is a power asymmetry in the therapeutic relationship between healthcare provider and patient. The healthcare provider controls treatment. The imbalance becomes greater when chronic pain patients also have disadvantaged social identities. This imbalance can generate a downward spiral of pain, as those more likely to be doubted by a healthcare provider are more likely to receive a delay in treatment or no treatment at all, leading to more serious and chronic conditions. Those disadvantaged in social status are also likely to lack the resources to seek a second opinion or even find alternatives.

To prevent a wall constructed from implicit attitudes or prejudicial stereotypes, patients aware of their lower epistemic status act strategically, making extra efforts to present as trustworthy. This puts the burden on the suffering patient, rather than the healthcare provider. This burden of trustworthiness exacerbates the patient’s suffering, further causing harm as a result of an epistemic failure by the healthcare provider.

To make this epistemic practice more equitable, the healthcare provider must assume responsibility for the heuristic in which he assesses the patient’s testimony, just as the patient assumes responsibility for the truth of her statement. Such a shift in epistemic responsibility does not eliminate the power imbalance, but it does redistribute some of the burden of achieving a successful testimonial exchange back on to the healthcare provider in his role as a hearer and it reduces risks of exacerbating the patient’s suffering.

The nationwide opioid crisis and the latest CDC opioid prescribing guidelines have complicated chronic pain treatment. More and more healthcare providers fear being tricked by someone seeking a high, and it is not unreasonable for them to worry about overprescribing opioids. However, little attention is being paid to the impact this heightened fear associated with pain management may have on already fragile pain testimonial exchanges between healthcare providers and their female and racial-minority patients. Trust is even more difficult to interpret from a state of fear.

Dealing with the opioid epidemic comes in conflict with the continued unresponsiveness to populations regularly untreated for their chronic pain—populations who, as a result, are losing trust in the medical industry. I worry that if we do not encourage healthcare providers to assume the epistemic responsibility of their assessment of trustworthiness, a deeper gap will open between providers and patients, adding a more unjust load to those already hauling a double burden. More work needs to be done to figure out a better way for healthcare providers to hear the testimonies of members of disadvantaged social groups while still addressing both opioid prescriptions and chronic pain responsibly.

Jada Wiggleton-Little

Jada Wiggleton-Little is currently a Ph.D student at the University of California San Diego and a research fellow at its Institute for Practical Ethics. Her research interests include philosophy of mind, feminist epistemology, and clinical ethics. She is especially interested in how the three intersect.