Nobody Teaches You How To Be A Patient

The lived experiences of neurodivergent, disabled and chronically ill trans people

An introduction

This resource was written and produced by neurodivergent, disabled and chronically ill trans and non-binary people living in the UK. It aims to highlight the strategies that we employ to overcome the additional barriers we face in accessing care, as well as draw attention to those challenges.

All people deserve full and equal access to healthcare services, but this is not always the reality. People’s identities enter the GP’s office with them, and this can disadvantage their care. TransActual’s 2021 Trans Lives Survey found that 70% of respondents experienced transphobia when trying to access non trans-specific healthcare services. In addition to this, 60% of disabled respondents reported experiencing ableism when accessing trans-specific healthcare. This means that neurodivergent, disabled, D/deaf, and chronically ill trans and non-binary people have their access to care negatively impacted on multiple fronts. Furthermore, Black trans people and trans People of Colour reported experiencing ableism and transphobia in medical settings more frequently than white trans people did.

While we fight for better treatment in healthcare settings for trans people and for a better future, we hope that the lived experiences and resources in this collection can help individuals now. This collection is intended to aid people as they navigate these (often hostile) systems and try to overcome some of the barriers to accessing care in their lives. 

These collected pieces demonstrate that different people take different approaches to the challenges of accessing appropriate care, and that different solutions can work in different situations. We hope that this collection will help readers to think through the difficulties they may face in accessing medical, mental health and trans related services, and that reading these pieces might help people to find potential solutions to the problems they face.

Finally, we would like to thank everyone who took part in this project for their openness and generosity in sharing their experiences, and for their invaluable advice and perspectives.  We’d also like to thank the National Lottery Community Fund for funding this resource. Their funding meant that we could pay everyone who contributed to the project.