Endometriosis, a chronic disease, affects almost 2 in 10 women globally and often takes 7 years on average to reach a diagnosis. Most research on endometriosis and mental health looks at whether medical invalidation occurs and does not look at the impact of medical invalidation on people’s well-being and their attitudes toward accessing healthcare. Moreover, there is no published paper on medical invalidation in India.

This mixed-methods study explores the above research gaps by investigating whether medical invalidation affects people’s quality of life using surveys and people’s perceptions and attitudes towards accessing healthcare after experiencing medical invalidation using semi-structured interviews. A sample of 9 participants, 4 from India and 5 from the United Kingdom participated in the survey and semi-structured interviews. Results revealed that systemic medical invalidation can lead to an avoidance and delay of participants accessing healthcare, unless desperate. Moreover, participants internalize pain invalidation by healthcare professionals which contributes to self-doubt, shame, and low self-perceptions and self-confidence. Furthermore, systemic healthcare barriers like stigma, multi-disciplinary teams, power dynamics between doctors and patients, and wait times to access healthcare were addressed.

The current research has significant contributions to understanding the impact of medical invalidation on people with endometriosis and the barriers to healthcare.

Anjelene Aparna Varsha John Peter has completed her MSc Psychology (Conversion) and comes from an intersectional background of social sciences, psychology and economics.