For over 14 years, the last day of February, a month known for its rare number of days, has been recognized by organizations across the globe as Rare Disease Day. With over 300 million patients worldwide impacted by 7,000+ rare diseases, the day serves as an international campaign to raise awareness around rare diseases and advocate for improved care for rare disease patients.
An often overlooked aspect of the rare disease patient narrative is a patient’s experiences with medical gaslighting and ineffective communication with health care professionals (HCPs). Research shows that over 87 percent of rare disease patients feel unsupported in their care due to a lack of trust and communication with their HCP compounded by the provider’s lack of knowledge.
Unrecognized and unchecked medical gaslighting can lead HCPs to ignore, undertreat, or misdiagnose health issues.
Broadly speaking, medical gaslighting is a form of cognitive manipulation where an individual with more power, in this case, the physician, constructs the less powerful individual, or the patient, as non-credible. Medical gaslighting can include a physician dismissing a patient’s symptoms and complaints as insignificant, imaginative, or predominantly rooted in a psychological cause. Given the underlying power dynamics in the patient-provider relationship, the health care landscape is particularly vulnerable to medical gaslighting.
As medical gaslighting is a form of emotional invalidation, it has been linked to long-term consequences on psychosocial well-being, including depression, physiological stress reactions, reduced social engagement, and maladaptive behavioral responses to distress. When HCPs invalidate or dismiss a patient’s symptoms, they induce feelings of shame and self-doubt within the patient by suggesting that the individual’s pain is not worthy of support, in turn perpetuating a depressive state.
For rare disease patients, the risk of experiencing medical gaslighting is significantly escalated due to the paradigm shift that occurs in the communication pattern between them and their HCP.
Typically, because patients often lack the technical expertise necessary to make health care decisions, they rely on their HCPs to act as their agents and inform them of the best decision. Consequently, as physicians assume an agency role for their patients, most patients experience a communication pattern that is predominantly physician-directed.
For rare disease patients, however, HCPs cannot adequately assume this role, as in most cases, HCPs do not possess sufficient knowledge of the rare disease to make an effective recommendation. As a result, patients with rare diseases find themselves experiencing a patient-directed communication pattern, in which they are forced to acquire knowledge of their disease on their own while physicians act as passive participants, predominantly providing consent for treatment that is first advocated for by the patient.
Rare disease patient advocacy organizations have played an important role in facilitating the education process for patients, connecting them with appropriate resources, and providing support throughout their disease journey. However, these organizations continue to place the burden for education on the patient rather than the provider, effectively perpetuating a patient-directed interaction that further exacerbates the mistrust between patients and their providers. Now, it is up to the medical education system to remove this burden from rare disease patients by preparing HCPs to communicate effectively with them.
Since the patient-directed interaction pattern is different from the communication pattern that is traditionally taught and implemented by HCPs, the shift can often lead HCPs to communicate ineffectively with rare disease patients.
For example, sometimes a physician may attempt to reassert control by ignoring or questioning the patient’s suggestions, instead pushing their opinion without regard for the patient’s thoughts. With the burden falling on the patient to educate themselves and their HCP on the disease and possible treatments, navigating conversations with transgressed HCPs can often lead to unintentional but consequential instances of medical gaslighting.
Understanding and preventing medical gaslighting is crucial to improving the quality of care for rare disease patients. While it is impossible to educate HCPs on 7,000+ rare diseases, it is possible to change HCPs’ communication style with rare disease patients to be mindful of the diagnostic experiences that are endured by these patients.
Language that reasserts a paradigm of distrust, including words such as “unexplainable” or “tricky,” should be avoided by HCPs when discussing patients’ symptoms. Simultaneously, in cases of clinical uncertainty, HCPs should feel comfortable responding along the lines of “I don’t know” while still working with the patient to discuss the next steps in searching for answers.
Most importantly, HCPs should ensure that their language validates the patient’s feelings, acknowledges their concerns, and provides guidance for the patient to feel safe in the health care space. Like other patients, rare disease patients deserve a trusting relationship with their HCP, and it is the HCP’s responsibility to communicate in a manner that facilitates such a relationship.
Rare disease patients face a unique diagnostic journey as a result of their rare disease. Rare disease patients should feel empowered to share their narratives, as their perspective can best shape the changes in communication that need to occur. Ultimately though, it is crucial to educate HCPs in effective communication techniques during rare disease diagnoses to truly change the rare disease patient narrative for the better.
Shvetali Thatte is a premedical student.