Seizures, Surgeries and Living Authentically: Talking About Epilepsy - Jonathan Tuteur

The Invisible Condition Podcast

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You have your first few seizures and people tell you not to share your diagnosis of epilepsy because they are afraid for you. Afraid of the potential shame and discrimination you will face. While this is well-intentioned, you do the opposite.

In this podcast episode, we hear from Jon Tuteur, who shares his experiences of living with epilepsy after being diagnosed at 30. Jon talks about enduring over 500 seizures and undergoing three brain surgeries. Despite these challenges, he focuses on the positives that have emerged from his condition and emphasizes the importance of staying optimistic.

Jon discusses how his journey has taught him about resilience, the real timeline of recovery, and the value of being open about one's condition. He highlights how being honest and vocal about his struggles has helped to build connections and foster support from others.

The episode isn't just for those who have epilepsy. Jon's insights are universal, offering lessons on overcoming obstacles and the power of community support. His story is a testament to the strength found in vulnerability and the impact of sharing one's experiences to educate and reduce stigma around invisible conditions.
Takeaways:

• Maintaining a Positive Mindset: Jon Tuteur emphasizes the importance of staying positive, despite the severe challenges posed by epilepsy. This positive outlook has helped him navigate through numerous medical procedures and life changes, highlighting that a positive mindset can be a powerful tool in dealing with any invisible condition.
• Open Conversations and Reducing Stigma: By sharing his personal experiences openly, Jon illustrates how such discussions can educate others and dismantle the stigma often associated with invisible conditions. He encourages everyone to be vocal and honest about their struggles to foster a more understanding environment.
• Curiosity and Understanding: Jon stresses the importance of curiosity and striving to understand what life is like for those with invisible conditions. He advocates for asking questions and learning from individuals' experiences to gain a deeper comprehension, rather than making assumptions based on limited or inaccurate information.
• Self-Advocacy: Jon’s journey shows the necessity of self-advocacy in managing our conditions, securing necessary medical care, and ensuring accommodations in the workplace. His proactive approach in both his personal and professional life serves as a model for others on how to advocate effectively for oneself.
• Asking Questions Over Making Assumptions: Consistent with his call for curiosity, Jon points out that making assumptions about someone’s condition can lead to misunderstandings and misrepresentations. He advises that asking questions to understand a person’s experience directly is far more supportive and informative.

Jon is an Executive Coach, Facilitator, Speaker, Author, and Management Consultant with over 20 years of experience working across numerou

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Chapters

1. Living With Epilepsy (00:00:00)

2. Breaking the Stigma of Epilepsy (00:15:12)

3. Finding Your Voice and Overcoming Shame (00:28:29)

4. Living With Seizures (00:43:07)

5. Future Connection After Book Release (00:49:18)