From September 7-9, 2023, the Rare Fair was held in Research Triangle Park, North Carolina, and was also available for attendance online. This event began in 2018 and has been spearheaded by The Dash Alliance. This year’s iteration was also co-hosted by Rare Revolution Magazine, a publication focused on rare diseases. Patient Worthy had the privilege to attend this year’s event and provide coverage on social media.

One of the fair’s sessions was focused on a topic that many conferences would rather avoid: medical gaslighting. In the modern context, gaslighting refers to an abusive dynamic in a relationship between two people in which one person, the ‘gaslighter’ repeatedly and persistently puts forward a false narrative with the goal of manipulating the other person, who has difficulty maintaining their autonomy.

Medical gaslighting refers to a similar situation in a medical context, specifically referring to the relationship between a patient and their doctor. Examples of medical gaslighting include doctors ignoring or invalidating feedback and concerns from patients, blaming patients for their medical state, dismissing real, physical symptoms as having a psychological or mental origin, and discouraging patients from seeking a second opinion.

Medical gaslighting is especially problematic for rare disease patients during the process of seeking a diagnosis. Aside from experienced specialists, many doctors lack awareness about most rare diseases. In the modern world, everyday people have come to rely on the expertise of specialists, and when these ‘experts’ won’t accept what a patient is saying at face value, the results can be devastating.

Navigating the healthcare industry in the US is usually a stressful experience already, but a dismissive physician can inflict profoundly harmful trauma that can lead patients to fear seeking the treatment that they urgently need. This trauma leads to poorer treatment outcomes and even premature death. Multiple patients at the Rare Fair shared their experience of medical gaslighting. Overall, it appears to be an experience shared by many people living with rare diseases.

An especially troubling dynamic that was brought to light during this session was how racial and gender bias can easily make medical gaslighting even worse. Studies have shown that patients who go to a doctor of a different gender or racial background are at an increased risk of misdiagnosis or not receiving proper treatment for pain.

Aside from inflicting trauma on patients, which often leaves them with severe anxiety surrounding seeking medical treatment, medical gaslighting can also lead to wasted time with unnecessary testing or procedures, which can be painful and expensive. 

All of the myriad issues that are caused by medical gaslighting can feel insurmountable, but there are ways to help counteract it. Some of the solutions that patients shared during the session included:

1. Have a supportive caregiver with you at appointments to help advocate for your experience. Patients specifically mentioned the value of having a male support present, whether a friend, father, or partner.
2. Have a self-care plan following your appointments. Doctor visits are never enjoyable, but feeling unheard or gaslit can be extremely distressing. Clear your schedule and make some time to regulate your emotional state.
3. Find providers that will listen. It’s much easier said than done to switch doctors, but if your doctor isn’t taking anything you say seriously, then it’s probably time to seek care from someone else.