Coping with TS

For people with Tourette Syndrome (TS), engaging with the media can be a powerful way to raise awareness, break stigmas, and even raise funds. However, it’s important to approach such opportunities thoughtfully. Here are some key considerations and tips for navigating media appearances to ensure a positive and respectful experience.

1. Preparing for a Media Appearance

Before committing to a media project, it’s crucial to understand the nature of the program. Whether it’s a news piece, documentary, or entertainment show, research the production company and their previous work. Make sure they are reputable and have knowledge of TS. Ask plenty of questions—why they approached you, what their goals are, and how they plan to portray TS. Be cautious of any programme aiming for sensationalism or an “inspirational” narrative that might not align with how you wish to be represented.

2. Key Tips for Media Engagement

• Journalists & Filmmakers: Media representatives may contact you through social media or email. Ensure that their goals align with your values, and don’t hesitate to say no if it doesn’t feel right. You can also explore creating your own content to share your story on your terms. Don’t let anyone pressure you into actions or statements that don’t feel authentic to you. Know that you owe the production team nothing and it is not your responsibility to educate the population.  
• During Filming or Interviews: Request a clear plan of what will happen before, during, and after filming to minimise stress. Ask if the crew has experience working with neurodivergent individuals and share any specific needs you may have, such as breaks or considerations for fatigue.
• Your Requirements: Media projects often demand long hours and patience. Make sure the team knows your boundaries and preferences before filming starts, and feel free to request these be included in a formal agreement. Ask for support during the process.
• Editorial Control: Request to review the content before it’s published or aired. Knowing the program’s title and intended tone can help ensure that the final product reflects your story accurately and respectfully. Also, keep in mind that once your story is published, it can stay online indefinitely.

3. Support network

Before agreeing to a media project, think about how it may affect your family and friends. Some programs may want to film you in your everyday life, so it’s important to ensure that everyone involved is comfortable with the process and potential public exposure. Negative feedback, especially online, can be harsh. Make sure you have a strong support network to help you through any challenges that arise.

4. Public Reaction and Aftercare

While media exposure can lead to increased understanding and support, it can also attract negative attention. Be prepared for a variety of reactions and ask the production team if they offer aftercare support in case the aftermath becomes overwhelming. Managing expectations is key—your life won’t dramatically change after a brief media appearance, so stay grounded and don’t feel pressured to represent the entire TS community.

Final Thoughts

Working with the media can be an empowering and positive experience, but it’s essential to prioritise your well-being and comfort. By asking the right questions, setting clear boundaries, and ensuring that the portrayal of TS is respectful, you can help educate the public while also protecting your personal and emotional health. If you’re not entirely comfortable, it’s okay to say no and wait for a better opportunity in the future.