The Invisible Condition Podcast

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Imagine travelling halfway across the globe to learn about a treatment that would benefit your child. Endless research, countless unanswered questions, and the frustration of feeling like you're the only one fighting for solutions. How do you keep going when the healthcare system falls short?

In this episode, Jess Dove London, founder of Turnto.ai, shares her journey in seeking effective treatments for her child with cerebral palsy. Jess discusses the challenges of navigating the healthcare system, the importance of accessing reliable health information, and how her app helps individuals find daily health breakthroughs. 

She emphasizes the need for community support, vulnerability, and curiosity in advocating for oneself, and explores how AI tools can assist in uncovering answers to health-related questions. 

Takeaways:

• Health Information Access: Comprehensive health information is crucial for individuals with disabilities to make informed decisions about treatments.
• Community Support: Sharing knowledge within a community is vital for navigating the healthcare system and fostering advocacy.
• Turnto: Turnto.ai offers daily health breakthroughs, using technology to empower those with invisible conditions.
• Vulnerability in Advocacy: Vulnerability and curiosity are essential in advocating for oneself in the healthcare system.
• AI in Healthcare: AI tools provide valuable insights, simplifying healthcare navigation for individuals with disabilities.
• Ending Stigma: Ending stigma around invisible conditions requires belief, empathy, and strong community support.

For her son’s condition, cerebral palsy, Turnto.ai has already discovered more treatments than anywhere else, including a handful that have truly changed his life. The platform is now expanding its reach to include conditions like Long COVID, ME/CFS, Parkinson’s and more.

As we end every episode, we talk about how we can end the stigma surrounding invisible conditions through belief, empathy, and curiosity.

Jess Dove London - Bio
Jess founded Turnto after she was told countless times that there were “no treatment options” for her two sons with serious chronic medical conditions.

However, after years of research, travel and investigating, Jess found a handful of treatments that helped her family tremendously.

Most of these treatments were hidden in medical literature, some even low-cost and easy to apply.

She knew many families, just like hers, were going through the same experience, unaware of the life-changing opportunities available to them.

So she set on building Turnto, bringing together the latest technology, consumers and experts to solve this problem with the aim of bringing thousands to their next medical breakthrough quicker.

https://www.turnto.ai/
Turnto App: Daily breakthroughs for all health conditio

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What advice would you offer someone who is struggling to advocate for themself?

What does it truly mean to advocate for yourself, and why is it often such a challenging journey? 

Living with Crohn's and arthritis has taught me the critical importance of self-advocacy, and through this journey, I've come to understand that demanding what you need is essential for personal well-being. 

In today's journal entry, I share my personal struggles and observations, offering a candid look into how self-advocacy has shaped my life. Listen as past interviewees like Leah Seth, Deborah King, Matthew Sebastiani, Laura Lee McPherson, Julie Stamm, and Alicia share their insights on self-awareness, courage, privacy, education, and communication. 

I also discuss strategies such as understanding your core values, assuming positive intent, doing thorough research, and building emotional resilience.

Building a supportive self-advocacy community is crucial. 

Inspired by Leah's quote, “Most people around you want you to be successful, and advocating for yourself is just letting them know what you need to make that happen," we'll explore how most people around us genuinely want to see us succeed, and that effective self-advocacy is all about communicating our needs to achieve that success. 

For listeners struggling with self-advocacy, I encourage you to reach out through my contact form at invisiblecondition.com, leave a comment, or connect with me on social media. If I can't assist directly, I'll guide you to exceptional invisible disability coaches who can. Tune in for empowering encouragement and actionable advice to navigate your challenges successfully.

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• Website: invisiblecondition.com
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• Apple Podcasts: https://podcasts.apple.com/us/podcast/the-invisible-condition-podcast/id1703432562

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Have you ever wondered how to successfully navigate the workplace with an invisible disability? Join us as we chat with Debbie Pearmain, an HR expert and leadership development coach, who shares her invaluable insights on self-advocacy and building trust with your manager.

Learn practical strategies to communicate your challenges and propose solutions, ensuring that individuals with invisible conditions can excel professionally. Debbie also discusses the broader context of disability inclusion, stressing the importance of equitable treatment and the elimination of biases in workplace culture.

Debbie highlights the critical role of compassionate leadership and reflects on the importance of psychological safety and open communication in addressing performance issues. Gain insights into how companies can create engaging and inclusive work environments by showing genuine care and flexibility, which are essential for retaining and attracting top talent.

Overcoming the fear to self-advocate is a journey worth undertaking. Debbie provides practical steps to build confidence in sharing personal challenges, starting with safe, trusting workplace relationships. Explore tools and resources such as the adapted Situation-Behavior-Impact (SBI) feedback model and websites like askjan.org and disclo.com to support your journey.

This episode includes strategies and insights for employees and leaders alike, empowering you to create a more compassionate and inclusive workplace.

Takeaways:

• Inclusive Environment: Disability inclusion requires a diverse and welcoming workplace.
  Psychological Safety: Trust is crucial for employees to disclose invisible conditions.
  Leadership Role: Leaders must create compassionate and supportive environments.
  Fear of Disclosure: Fear impacts well-being, necessitating understanding from leaders.
  Collaborative Performance: Performance management should remove barriers and support employees.
  Self-Acceptance: Self-acceptance and compassion are key to personal growth.
  Building Confidence: Overcoming fear involves starting with safe, gradual conversations.
  Ending Stigma: Ending stigma needs empathy, diversity, and inclusion.
  Difficult Conversations: Navigating tough talks requires self-reflection and open communication.

Debbie Pearmain - Bio:
Debbie has over 25 years of experience working with CEOs and leadership teams, facilitating organizational transformation for companies like Accenture, Telus Health, and One Stop HR. As a Flourishing Life and Workplace Coach with extensive training in Leadership Development and Emotional Intelligence, she excels in helping clients turn challenges into opportunities for growth and performance improvement.

Contact Links:

• http://www.onestophr.ca

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Thanks for listening, I appreciate you!
 
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• Website: invisiblecondition.com
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• Apple Podcasts: https://podcasts.apple.com/us/podcast/the-invisible-condition-podcast/id1703432562

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• YouTube: https://www.youtube.com/@Invisible_Condition

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What happens when the medical system fails to acknowledge your pain, and how do you find the strength to keep advocating for yourself? This episode promises an intimate and powerful conversation with Katie, founder of Revive and Thrive Coaching and host of "My Chronic Illness and Me" podcast. Katie takes us through her journey with endometriosis, where relentless self-advocacy became her lifeline amidst repeated dismissals by healthcare professionals. She shares the crucial role of finding a supportive community and how it transformed her experience from isolation to empowerment.

Katie's story is not just about personal struggle but also about redefining what success means when living with a chronic illness. We unpack the emotional and psychological challenges of stepping away from a successful career to prioritize health and well-being. Katie's candid reflections on the societal pressures to remain productive and the profound relief of taking time to heal offer valuable insights for anyone dealing with similar issues. Whether finding the right specialist, enduring inconclusive surgeries, or celebrating small victories, Katie's experience underscores the necessity of persistence and self-care.

Join us as we challenge the societal stigma surrounding chronic illnesses, particularly those predominantly affecting women. Katie opens up about the emotional toll of living with an invisible condition and the importance of honest communication in fostering understanding and support. We discuss strategies for balancing self-care with other life responsibilities and the power of storytelling in breaking down barriers. Tune in to be inspired by Katie’s resilience and learn how open conversations can cultivate a more compassionate and informed society.

Katie Donlevie - Bio
Empowering individuals facing chronic illness and pain challenges to reclaim their identity and thrive beyond survival mode.

I work with individuals facing chronic illness and pain challenges to reclaim their identity and thrive beyond survival mode.

Specializing in guiding people through transformative journeys, I help you rediscover yourself and re-engage in life outside of your condition. I am dedicated to helping you redefine success, bring your chronic illness back into harmony with the rest of your life, and stop fighting against your body every day.

Through my podcast, “My Chronic Illness and Me,” I also hold space for insightful conversations with people dealing with chronic illness and pain to offer support and foster a sense of community amidst what is often an incredibly isolating experience.

Ready to stop just surviving and start thriving? Let’s connect!

• https://www.reviveandthrivecoach.com/
• https://www.instagram.com/reviveandthrivecoaching/
• https://calendly.com/katie-donlevie/complimentary-coaching-interview?month=2024-06

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• Website: invisiblecondition.com
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• Apple Podcasts: https://podcasts.apple.com/us/podcast/the-invisible-condition-podcast/id1703432562

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Hey, it's Tim! Just wanted to share a bit about my recent adventures with Crohn's disease. So, I had a scope done recently and, surprise! Mild inflammation in multiple spots. Yeah, it's a bit frustrating, but I'm choosing to stay hopeful. After all, it’s not severe, and that's a win!

In this short episode, I talk about hope, scopes, advocacy, and developing a muffin recipe while on prednisone.

Let me tell you about my “manic muffins” story. When I was on a high dose of steroids, I couldn’t sleep. So, I started baking at 3 AM. My family eventually begged me to stop!

Advocating for myself has been a huge part of this journey. After a massive bleed, I called my doctor and said, “Hey, I think I need an iron infusion.” Turns out, my levels were low enough to get it done quickly. Then, I pushed for a scope to understand what was going on.

Living with chronic illness can be tough, but I choose hope and gratitude over frustration. It's better for my mental health, and it keeps me going. And remember, if your doctor isn’t giving you what you need, don't hesitate to get a second opinion. Your health matters!

Hope this little update brings some encouragement your way. Keep advocating for yourself and stay hopeful!

Link to muffin recipe: www.invisiblecondition.com/blog/tims-manic-berry-muffiis 

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• Website: invisiblecondition.com
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• Apple Podcasts: https://podcasts.apple.com/us/podcast/the-invisible-condition-podcast/id1703432562

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Imagine being an elite athlete, outwardly thriving but internally battling major depression, generalized anxiety, and social anxiety. That’s the reality for our guest, Sophia Lim-Metz, an 18-year-old who courageously opens up about her mental health journey. Sophia's story begins with an identity crisis after stepping away from hockey and navigating the mental health system post-suicide attempt in her grade 10 year.
We bring light on the often unseen struggles and the critical importance of caregivers and support systems in her recovery.

Sophia's brave decision to share her story highlights the power of storytelling in breaking the stigma surrounding mental health. She discusses the courage it takes to reveal one's internal battles, the misconceptions about mental illness and suicide, and how her own experience inspired her to speak at a high school to support at-risk students. This episode underscores the therapeutic benefits of voicing one's journey, aiming to foster greater empathy and understanding in our communities.

In our conversation, we touch upon the significant growth that comes from overcoming mental health challenges at a young age. Sophia's resilience and hope serve as a guiding light, showcasing that recovery is possible. We explore the impact of stigma, particularly within healthcare, and discuss systemic improvements needed to make mental health care more accessible. Join us for an episode filled with insights, hope, and the undeniable power of sharing one's story to inspire others.

Sophia Lim-Metz - Bio

Meet Sophia, a passionate and driven 18-year-old embarking on their first-year journey at Douglas College in the Child and Youth Care program. With a heart dedicated to making a difference in the lives of young individuals, Sophia has found fulfillment as a Learn to Skate Instructor at the Olympic Oval. It's not just about teaching skating skills; it's about fostering confidence and joy in the children she works with.

Known for her genuine affection for children, Sophia exudes warmth and patience in every interaction. She believes in the transformative power of empathy and connection, striving to create safe and supportive environments where every child feels valued and understood.

Driven by a desire to make a lasting impact on young people, Sophia aspires to become an Adolescent Mental Health Worker for the Richmond school district after graduating college. With a deep understanding of the challenges young people face, she is committed to providing the necessary support and guidance to help them navigate through difficult times.

In her free time, Sophia finds solace and companionship in her adorable dog named Ollie. Whether it's going to the dog park or simply cuddling on the couch, Ollie is a constant source of joy and comfort in her life.

With a genuine passion for helping others and an unwavering determination to create posit

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• Website: invisiblecondition.com
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• Spotify: https://open.spotify.com/show/4kDTQ9eTFpWFDID9vsXFxW
• Apple Podcasts: https://podcasts.apple.com/us/podcast/the-invisible-condition-podcast/id1703432562

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• YouTube: https://www.youtube.com/@Invisible_Condition

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Can chronic migraines and concussions be as debilitating as severe strokes or daily dialysis? In this episode, I sit down with Dr. Briar Sexton, a dedicated physician from British Columbia, to dive into the profound impact these invisible conditions have on quality of life. We explore the tough realities of diagnosing and managing chronic migraines, often overlooked due to their daily occurrence. Dr. Sexton shares her expertise on potential triggers, the value of keeping a headache diary, and the crucial need for self-advocacy to get the right diagnosis and treatment.

We also tackle the issue of misdiagnosis, which can lead to unnecessary anxiety. By delving into the psychological effects like anxiety and depression that come with chronic pain, we emphasize the importance of accurate diagnosis, especially with the new criteria introduced in May 2023. The episode highlights the complex challenges faced by concussion patients, especially those who were once very active, showing how these injuries can lead to broader physical and mental health issues.

From practical management tips to medication options, this episode contains actionable advice. Discover the benefits of basic vitamin and mineral supplements, the surprising effectiveness of powdered ginger for acute headaches, and the importance of pinpointing and managing your triggers. We also discuss the critical role of patient advocacy, the barriers to accessing treatment, and the ongoing efforts to reduce the stigma surrounding invisible conditions. 

Takeaways:

• Chronic migraines involve severe, debilitating headaches that can occur daily.
• Keeping a headache diary helps identify and manage triggers.
• Many doctors may lack detailed knowledge about chronic migraines, so self-advocacy and seeking a second opinion from a specialist is crucial.
• Concussions are often overdiagnosed and misdiagnosed, leading to confusion and invalidation. The new diagnostic criteria for concussions aim to provide clearer guidelines.
• Sensitive and empathetic communication is essential when discussing diagnoses and changes with patients.
• Active rehabilitation and lifestyle changes are important for managing both concussions and migraines.
• Ending the stigma surrounding invisible conditions requires education and advocacy.

Dr. Briar Sexton - Bio

“I am grateful every day for the opportunity to work as an ophthalmologist. Vision is a precious commodity, and it is a pleasure to work with my patients to protect and care for their eyes. Staying on top of new treatments and maintaining state-of-the-art equipment is another source of pride for me at the clinic. I am active both in attending and teaching at Continuing Education events. Since 2010, I have been actively fundraising for the Foundation Fighting Blindness. The research projects they fund bring hope for a cure for many retinal diseases.”

Dr. Briar Sexton is a li

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• Website: invisiblecondition.com
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• Apple Podcasts: https://podcasts.apple.com/us/podcast/the-invisible-condition-podcast/id1703432562

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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,

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• Website: invisiblecondition.com
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• Apple Podcasts: https://podcasts.apple.com/us/podcast/the-invisible-condition-podcast/id1703432562

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When was the last time you had a conversation with your colleagues, friends or family about suicide awareness and prevention?  Today’s episode has a content warning as my guest and I talk about a complex and serious topic - Suicide awareness and prevention. 

CONTENT WARNING: This episode contains some sensitive content as we talk about suicide.

Years ago, someone close to me came to me and said they wanted to end their life. I wasn’t prepared for the conversation. Years later, the conversion plays in my mind. They are still with us and I am grateful for that.

Tara Adams, founder of Abridge Consulting, focusing on improving mental health and preventing suicide in the workplace, shares her approach to creating safe spaces to discuss how to talk sensitively about suicide with children, friends, and family, emphasizing the need for safe spaces for such conversations. 

She also highlights how common the thoughts of suicide are and how crucial the language we use plays in ending stigma. Our conversation will equip you with knowledge and strategies to support those around you and to apply what you learn to honour lived experiences.

Takeaways:

• Talking about suicide is important to reduce stigma and provide support.
• Building a suicide-safer workplace involves reducing stigma and understanding individual roles.
• Creating a safe space for conversations about suicide is crucial, especially when talking to children.
• Language plays a significant role in ending stigma and promoting understanding.
• Honouring lived experiences and applying what you learn can make a difference in suicide prevention.

Tara Adams - Bio:

Tara Adams is the founder of Abridge Consulting, focusing on improving mental health and preventing suicide in the workplace. She helps organizations that want to invest in their employees' well-being and company culture. Tara started Abridge Consulting with the goal of connecting people experiencing mental health issues with the support they need faster. With extensive experience in training and employee wellness, Tara previously led mental health initiatives for 6,000 employees, enhancing their mental, physical, emotional, and financial well-being. Outside of work, Tara is a dedicated mother of two, an enthusiastic tennis player, and hopes to excel in senior tennis competitions in the future.

Contact Links:

• LinkedIn - http://www.linkedin.com/in/taraabridgeconsulting
• LinkedIn - http://www.linkedin.com/company/abridge-consulting
• Facebook - https://www.facebook.com/tara.adams.abridgeconsulting
• Twitter - https://twitter.com/TaraAdamsCgy

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Support the Show: https://www.buymeacoffee.com/timreitsma

• Website: invisiblecondition.com
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• Spotify: https://open.spotify.com/show/4kDTQ9eTFpWFDID9vsXFxW
• Apple Podcasts: https://podcasts.apple.com/us/podcast/the-invisible-condition-podcast/id1703432562

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• Instagram: https://www.instagram.com/invisible_condition/
• YouTube: https://www.youtube.com/@Invisible_Condition

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In this episode, I'm joined by Ally, who shares her firsthand experience with long COVID. Since her diagnosis, Ally has faced numerous challenges, from persistent symptoms that just won’t go away to major life changes that have reshaped her daily routine and long-term plans. We talk about the impact of long COVID on her life, including using a wheelchair and the ways she's had to adapt her environment and expectations.

Despite these hardships, Ally brings an incredible amount of positivity to our conversation. She talks about finding hope and acceptance in her new reality, and how these feelings have guided her through her toughest moments. It’s a straightforward and impactful discussion about living with a condition that's still largely misunderstood.

Takeaways:

• Understand Long COVID: Gain a deeper understanding of long COVID from someone who lives with it every day.
• Learn about Resilience: Hear how Ally copes with significant life changes and what keeps her moving forward.
• Discover the Power of Positivity: Ally’s approach to maintaining a positive outlook despite her challenges can inspire anyone facing adversity.
• Explore Acceptance: Learn how acceptance can play a crucial role in managing chronic health conditions.
• Get Motivated by Community Support: Find out how connecting with others has helped Ally manage her symptoms and feel less alone.

Tune in to gain insight into the real impacts of long COVID and how individuals like Ally navigate the complexities of their diagnosis with courage and determination."

Ally's Bio:

Ally is a young adult who has been living with Long Covid and subsequent diagnoses of POTS and ME/CFS since her one Covid infection during college in 2021. 

Her background in clinical research, passion for helping others, and newfound experience with invisible illness have led her to the health startup Turnto, where she's helping to build an app for the Long Covid community and eventually other health conditions.

Support the show

Thanks for listening, I appreciate you!
 
Support the Show: https://www.buymeacoffee.com/timreitsma

• Website: invisiblecondition.com
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• Spotify: https://open.spotify.com/show/4kDTQ9eTFpWFDID9vsXFxW
• Apple Podcasts: https://podcasts.apple.com/us/podcast/the-invisible-condition-podcast/id1703432562

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• Instagram: https://www.instagram.com/invisible_condition/
• YouTube: https://www.youtube.com/@Invisible_Condition