From TS diagnosis to disclosure: how do you share your story? Part I

In the latest episode of "Gilles is in the Air," we delve into the nuanced experiences of individuals living with Tourette Syndrome.

This episode, the first of a two-part series, welcomes Belinda Johnston from the UK and France, and María Belén Prieto from Argentina who lives is Spain.

Through candid conversations, our guests share their personal journeys with Tourette Syndrome, discussing their initial diagnoses, the social challenges they've encountered, and how they've navigated sharing their experiences with others.

Belinda recounts being diagnosed at a young age, supported by a network of professionals who provided valuable information to her family. Similarly, Belén shares her story of living without a diagnosis for years, eventually finding solace in understanding what was happening to her. 

As the conversation unfolds, both guests emphasise the importance of sharing their experiences with others, transforming potential stigma into understanding and empathy.

Belinda shares how her experience with Tourette has shaped her life, helping her develop resilience and empathy. Belén discusses the cultural differences she's encountered in her journey, highlighting a gap in knowledge and resources in different parts of the world.

Both guests illustrate how disclosing their condition to friends and colleagues has empowered them, shifting perceived vulnerability into a source of strength.

Belinda and Belén's experiences underscore a common theme: the transformative power of open communication in reducing stigma around Tourette Syndrome. Whether it's through professional psychological support or personal growth, they illustrate that while Tourette Syndrome is a significant part of their identities, it does not define their potential or limit their aspirations.

We invite you to listen in and reflect on their stories, fostering a broader conversation about Tourette Syndrome and the diverse ways it can impact lives. 

A warm thank you for your insightful participation!

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María Belén Prieto is an Argentine psychologist living in Spain, specialised in Tourette syndrome and its common comorbidities, including ADHD. As an adult with Tourette and ADHD herself, she brings both professional expertise and lived experience to her work, fostering understanding, empathy, and empowerment within the community. She is a proud mother of twins and a passionate traveler, values that deeply shape her perspective on resilience and connection.
María Belén is a member of the steering committee of Tics and Tourette Across the Globe (URL) and actively contributes to awareness, advocacy, and education at both national and international levels. Through her platform Voces del Tourette, she shares psychoeducational resources, promotes visibility, and amplifies the voices of individuals and families living with Tourette. She is deeply committed to supporting the Tourette community through education, collaboration, and compassionate outreach. 

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Belinda Johnston grew up in the West Midlands of the United Kingdom. A 2017 Joint Honours French and Italian graduate of the University of Leeds, UK, she now works as an Event Coordinator in Paris, France, where she has lived since 2018. In her spare time, she enjoys running, yoga, cinema, singing and is an active member of the local Church of England Christian community.
Belinda has lived with Tourette’s Syndrome all her life. She was officially diagnosed at the age of 5, in the UK, in the year 2000. She also has ADHD and suffers from anxiety. She has previously battled with depression.
Belinda tries to support the Tourette’s community where she can, taking part in her local hospital’s neurological department’s research projects and generally talking about Tourette’s and what it is really like to live with it. 
In 2018, she published an interview with BBC3’s MisFITS Like US’s Terrina Bibb on UK Tourette’s charity, Tourette’s Action’s blog.

You can read it here.

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