The Invisible Condition Podcast

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Summary:

Imagine struggling with your health for over a decade, visiting doctor after doctor, only to be dismissed as dramatic or told that it’s all in your head. That was Kenzie Vath’s reality before she finally received a diagnosis of Lyme disease at the age of 18—after suffering for 10 years. In today’s episode, Kenzie shares her powerful story of navigating chronic illness, enduring years of misdiagnosis, and how she found her voice through the struggle.

As an advocate for those living with Lyme disease, Kenzie has turned her pain into purpose. She talks about the importance of self-advocacy in the face of medical roadblocks and why trusting yourself—even when experts don’t—is key to survival. Through her journey, she learned that finding purpose, connecting with others, and sharing her story was essential not only to her healing but to supporting others.

We also dive into her book, The Ignored Pandemic: Real Stories of Lyme Disease, where she highlights the real-life struggles of people across the globe who are fighting the same battle. Through storytelling and vulnerability, Kenzie is on a mission to raise awareness and end the stigma surrounding Lyme disease and other invisible conditions.

If you’ve ever felt dismissed, ignored, or alone in your health journey, this episode is a must-listen. Kenzie’s story is a powerful reminder that your voice matters and that resilience, compassion, and community are at the heart of healing. Tune in to hear how Kenzie turned her diagnosis into a force for change and how you can, too.

Takeaways:

• The Importance of Self-Advocacy
• Finding Purpose Through Suffering
• The Role of Community in Healing
• Resilience in the Face of Medical Challenges
• The Power of Vulnerability and Storytelling
• Holistic Health and Lifestyle Choices

Contact Links:

• Website - Holistic Umbrella
• Book - The Ignored Pandemic
• Instagram - Holistic Umbrella
• LinkedIn

Kenzie Vath is the Vice President of Strategic Innovation at Pacific Hospitality Group, where she leads growth-driven strategies for the hospitality industry. She is also the President of Impact 100 OC, supporting collective philanthropy, and serves on the board of the Global Lyme Alliance, advocating for Lyme disease awareness. As the owner of Holistic Umbrella, she promotes holistic health, and she is the author of The Ignored Pandemic, highlighting the struggles of those affected by Lyme disease.

"You are the expert in yourself, and sometimes the hardest step in self-advocacy is trusting your instincts and pushing for the answers you know you need."

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In this episode of the Invisible Condition podcast, I share my personal journey of balancing life with a chronic illness, managing stress, and pursuing education. Reflecting on the challenges of health and academic demands, I emphasize the importance of finding moments of joy even during difficult times. I encourage listeners to reflect on their personal growth and prioritize self-care while reminding them that it's okay to say no to commitments that don't align with their values.

Takeaways

• Finding moments of joy – Even in the midst of stress and challenges, it's important to pause and reflect on moments of joy, no matter how small they may be.
• It's okay to say no – Saying no doesn't mean no forever, it might just be no for this particular season, and that's perfectly okay.
• Reflect on growth – Take time to reflect on how you are growing in this season of life, especially when things feel overwhelming. Reframing challenges from a negative to a more neutral or positive perspective can help you grow.
• Filtering decisions through your values – It's important to align decisions with your personal vision and values, especially when you're overwhelmed and tempted to say yes to everything. This helps maintain focus and prevents burnout.
• You don't have to struggle alone – Whether you're living with a chronic condition or just feeling overwhelmed, reaching out for support is essential. There are people and resources available to help, and it's okay to lean on them when you need it.

Links

Self-Advocacy Interview Series

Briana Pastor

Resource Hub

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Summary:

In this episode of The Invisible Condition Podcast, Nate Toves from Neil Squire discusses the critical role of workplace inclusivity for individuals with disabilities. He emphasizes the importance of disclosing barriers, rather than diagnoses, and highlights how employers have to provide accommodations. Nate explains the value of assessments and assistive technology in tailoring solutions that meet individual needs and encourages employees to research available programs and funding to support these accommodations.

Throughout the conversation, Nate shares positive experiences from employers who have embraced inclusivity, and he offers strategies for creating a safe environment where employees feel comfortable disclosing their needs. He stresses the importance of an inclusive interview process, helping employers attract and support talent with disabilities. Additionally, Nate underlines the unique value that employees with disabilities bring to the workforce, including problem-solving skills, resilience, and loyalty.

The episode ultimately advocates for both employers and employees to take action—employers to foster inclusive environments and employees to come prepared with solutions and self-advocacy strategies. Ending the stigma around invisible conditions, Nate argues, begins with awareness, education, and a focus on empowering individuals to speak up for the tools and support they need.

Takeaways:

For Individuals:

• Communicate Your Needs: Don’t be afraid to ask for accommodations, but focus on describing the barriers you face rather than disclosing your diagnosis. Bring potential solutions if possible.
• Leverage Available Resources: Research programs and funding available for accommodations, such as government assistance, assistive technology, or workplace policies, to support your needs.
• Build a Support Network: Reach out to colleagues, HR, or other employees who have gone through similar situations for advice and emotional support.

For Workplaces:

• Create a Safe Disclosure Environment: Encourage a culture where employees feel comfortable asking for accommodations by being open about the process and educating your leadership team on inclusion.
• Offer Flexible Accommodations: Be proactive in offering accommodations during hiring and onboarding, like ergonomic assessments or flexible work arrangements, to make employees feel supported from the start.
• Provide Inclusive Job Descriptions: Write job ads that focus on essential skills rather than unrealistic qualifications, and clearly state your willingness to accommodate from the interview stage onward.

Nate Toves - Bio
Nate is the Marketing Manager at Neil Squire, a non-profit organization that has been revolutionizing the lives of Canadians with disabilities since 1984 through accessible technology. 

Nate has a long-standing background in Retail, Wholesale and business-to-business sales and marketing a

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Imagine going through life without the ability to burp. You might think it’s no big deal but did you know, on average, we burp 10-20 times a day to release the air we take in?

In this episode, Henry shares his life with no-burp syndrome, also known as R-CPD. Henry talks about the physical and social challenges he faced, including countless doctor visits and misdiagnoses, until he finally found relief through an online community that led him to the right treatment.

If you struggle with self-advocacy, this is for you! Henry talks about the importance of standing up for yourself in healthcare. He explains how his persistent research and determination helped him find a doctor who understood his condition and provided the procedure that changed his life. He talks about the balance between trusting medical professionals and doing your research to ensure you get the care you need.

We also touch on the bigger picture of healthcare advocacy and the stigma surrounding invisible conditions. 

Henry shares his thoughts on when to seek treatment and the need for society to better understand and support those with invisible disabilities. By sharing stories like Henry’s, we aim to reduce stigma and encourage open and supportive conversations. 

This episode is not just informative—it’s an inspiring reminder of the power of perseverance and the importance of being your own advocate.

Takeaways:

• Advocate for Yourself: Take an active role in your healthcare by doing your own research and speaking up about your condition. Your persistence can lead to better outcomes.
• Seek Second Opinions: Don’t hesitate to get another perspective if you feel your concerns aren’t being fully addressed. Questioning a diagnosis is a vital part of ensuring you receive the right care.
• Educate and Support: Help end the stigma around invisible conditions by educating yourself and offering support to others who live with them. Awareness is key to building a more understanding society.
• Informed Discussions: When discussing your condition with doctors, bring facts and research to ensure a thorough and informed conversation. This helps in making collaborative decisions about your health.
• Quality of Life Matters: Improving the quality of life for those with invisible conditions has significant positive effects on overall well-being, emphasizing the need for proper treatment and support.

No-Burp Syndrome (Retrograde Cricopharyngeus Dysfunction, RCPD) - Defined:

• A rare condition where the muscle responsible for allowing air to be released from the stomach does not relax, making it impossible to burp. This can lead to significant discomfort, social embarrassment, and digestive issues due to the accumulation of air in the digestive tract.

Bio: Henry L is a father and husband with two sons, and he is also the owner of a Golden Doodle. 

In his spare time, he enjoys spending time with family and friends, observing nature, and playing sports. On days whe

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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 conditions

Cerebral palsy, Long Covid + ME/CFS, Parkinson’s, multiple sclerosis (MS), spinal cord inj

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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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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
• https://www.linkedin.com/in/debbie-lang-pearmain-116551/

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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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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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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 positive change, Sophia is poised to make a meaningful difference in the world of child and youth care and mental health advocacy.

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