In this episode, I share my personal experience living with narcolepsy with cataplexy, from early symptoms in childhood to my diagnosis in 2018. I talk about what narcolepsy actually looks like day to day—excessive daytime sleepiness, cataplexy triggered by laughter or surprise, vivid dreams, and the long-term impact of living with a chronic neurological condition.

This episode is intentionally conversational and not perfectly linear. As someone with ADHD and a neurodivergent brain, my thoughts often connect in overlapping, nonlinear ways—and that mirrors the reality of living with chronic, invisible illness. Rather than editing that out, I chose to leave it in as an honest reflection of how my brain works and how these conditions are experienced in real life.

This podcast centers patient experience, disability awareness, and the emotional weight of illnesses that aren’t always visible or understood. If you live with narcolepsy, ADHD, or another invisible condition—or if you want to better understand what these experiences are really like—this episode is for you.

Turns out, Ehlers Danlos and weight loss may impact your muscle mass and joint stability more than you may know. Stay tuned to hear more about how weight loss can impact loss of muscle mass leading to potential joint instability and worsened chronic pain. I would love to hear from anyone with EDS / HSD that may have experienced significant or rapid weight loss and subsequently suffered from worsened symptoms and pain.Please contact me at [email protected] with any comments, suggestions, questions, etc. I would also love to know more about any personal experiences you or a loved one has had.

Navigating Chronic Illness: Insights from an Occupational Therapist's Journey with Ehlers-Danlos and EndometriosisChronic illness can often feel like a solitary journey, but sharing experiences can foster understanding and empathy. In this episode of the Bendy Nurse podcast, host Mallory Macon interviews Zada, an occupational therapist, who opens up about her personal journey with Ehlers-Danlos Syndrome (EDS) and endometriosis, shedding light on the often-overlooked aspects of these conditions.Understanding Endometriosis and Ehlers-Danlos Syndrome:Zada begins her journey with endometriosis, recounting her first experiences with unexplained pain during high school. She explains the frustrating path to diagnosis, which took several years. Statistically, it takes around seven years for individuals to receive a diagnosis of endometriosis, as many doctors first recommend various treatments like birth control before confirming the condition through laparoscopic surgery. Zada was officially diagnosed in 2014, but her struggles did not end there. In 2020, while working as an occupational therapist, Zada underwent her first excision surgery related to her endometriosis. This procedure represented a critical step in managing her condition, especially after facing challenges during the COVID-19 pandemic.The Impact of Occupational Therapy on Chronic Illness:Zada's experience as an occupational therapist has provided her with unique insights into her conditions. She discusses how her work contributed to her health struggles, particularly due to manual lifting and the physical demands of her role. After recognizing the toll it was taking on her body, she made the decision to shift from inpatient to outpatient care, allowing her the flexibility to manage her health better.Zada emphasizes the importance of self-advocacy in healthcare. She encourages patients to speak up about their symptoms and concerns, as she has often had to navigate the healthcare system as both a provider and a patient. Her firsthand experience in advocating for herself has made her more empathetic toward her patients, particularly those who may feel dismissed or misunderstood.Finding Support and Community:Throughout the podcast, Zada shares her journey toward finding support and understanding within the medical community. She recalls how a pelvic floor therapist helped her uncover additional issues related to her endometriosis and EDS, illustrating the importance of comprehensive care. Zada's story highlights the necessity of having healthcare providers who listen and validate patients' experiences.Moreover, Zada discusses the stigma surrounding chronic pain, particularly for women. She reflects on the tendency for individuals with chronic pain conditions to be labeled as 'drug-seeking' when they seek help, emphasizing the need for a more compassionate understanding of pain management.Key Takeaways:Zada's journey through chronic illness and her work as an occupational therapist provide valuable lessons in resilience, self-advocacy, and the importance of compassionate healthcare. Her story reminds us that living with conditions like Ehlers-Danlos Syndrome and endometriosis requires not only medical intervention but also understanding, support, and community. By sharing experiences and encouraging open dialogue, we can help others navigate their own health journeys more effectively.Tags: Chronic Illness, Ehlers-Danlos Syndrome, Endometriosis, Occupational Therapy, Patient Advocacy, Healthcare, Women's Health, Pain Management, Holistic Approaches

When your child is diagnosed with Type 1 Diabetes, life changes overnight. In this episode, Kaelynn shares her journey as a mom learning to navigate her son's diagnosis - emotionally, medically, and mentally. Whether you're a parent of a child with a chronic condition or just trying to make sense of the chaos of motherhood, you'll find pieces of your own story here.We talk about the highs and lows of parenting through uncertainty, what it's really like managing a child's chronic illness, and the strength it takes to show up day after day. Along the way, we include some diabetes-specific insights to help educate and build understanding for those unfamiliar with Type 1.This episode ties into the heart of the podcast's mission: creating space for honest conversations about health, motherhood, and resilience - so no one has to feel alone in what they're carrying.Tune in, take a deep breath, and know that wherever you are on your journey - you belong here.#type1diabetes #motherhood #chronicillness #benddontbreak #parenting #diabetesawareness #resilientmoms #mentalhealth #podcast #childhoodillness

Welcome to the first episode of The Bendy Nurse Podcast!Episode 1 talks about some general background info about EDS, in particular, why the zebra is the symbol for the EDS community. Hear a little bit about my experience leading up to and since diagnosis, and a little bit of what I hope to achieve out of publishing this show.I look forward to what's to come and hope you all will find this to be a safe space where you know you will be seen and heard.Please reach out to [email protected] with any topics you'd like to see discussed, or any questions you'd like me to try and answer.Please hit the subscribe and like button, and share to anyone you know who may benefit from listening to this channel.P.S. I am very new to the podcast editing world, so please forgive the technical difficulties, mic problems, etc. I promise it will improve over time :)