Rarely Typical Podcast

Nobody hands you a job description when you get diagnosed with a chronic illness. One day you’re just living your life, and the next you’re coordinating care between multiple specialists, managing specialty pharmacy deliveries, navigating prior authorizations, and figuring out how to actually get someone on the phone at your insurance company. No training. No onboarding. Just you, doing your best.In this episode Gerry gets honest about what it really looks like to manage a serious diagnosis behind the scenes, and why the invisible labor of being a chronic illness patient is a full-time job nobody asked for.She talks about what it’s been like this year trying to get a basic procedure scheduled locally, hitting wall after wall because of her medical history, and ultimately having to travel to Mayo Clinic two and a half hours away for something most people handle down the street. She also gets into what it means to keep all of the other pieces moving at the same time, the refills, the supplies, the appointments, the clinical trial, all of it, while still trying to just be a person.If you are a patient who is tired in a way that sleep doesn’t fix, this one is for you.In this episode:What nobody tells you about life after a chronic illness diagnosis, the real behind-the-scenes of managing PAH treatment and care, what happened when two local facilities turned Gerry away for a routine procedure, why coordinating your own care sometimes feels like guessing with high stakes, and what Gerry wants other patients to hear when it all feels like too much.Connect with Gerry: @itsgerrylangan on Instagram, TikTok and YouTube.This is not medical advice and I’m not a medical professional, just a professional patient. Please speak to your doctor if you have questions about your medical care and not some stranger on the internet. Get full access to Rarely Typical, by Gerry Langan at itsgerrylangan.substack.com/subscribe

In this episode of Rarely Typical, I’m getting honest about something I think so many of us feel but don’t always say out loud, burnout.Not just chronic illness burnout, but life burnout. The kind that touches everything, your energy, your motivation, your creativity, and even the things you once felt called to share.I open up about why my content has been quieter lately and the tension I’ve been living in. On one hand, I’ve been experiencing more good days, days where I feel healthy, present, and able to just live my life. And on the other hand, showing up to talk about chronic illness during those moments can feel like a buzzkill, like I’m pulling myself back into something heavy when I finally have a little space to breathe. (Literally and figuratively)I talk about the emotional weight of always being the “voice” for something hard, the pressure to keep showing up, and what it looks like to give yourself permission to step back without guilt.This episode is for anyone who feels stretched thin, who is tired in more ways than one, and who is trying to figure out how to hold both gratitude and exhaustion at the same time.There is space for both.And maybe this part of the story, the stepping back, the living, the choosing joy when you can, is just as important as the parts where we fight and advocate.What You’ll Hear in This Episode:* What chronic illness burnout actually feels like* Why I’ve been pulling back from content* The tension between advocacy and actually living your life* Learning to enjoy good days without guilt* Why this season still matters, even if it looks differentDisclaimer: I’m not a medical professional, just a professional patient. Rarely Typical is based on my personal experiences and is not intended to be medical advice. Always consult with a qualified healthcare professional for any medical concerns or decisions. Get full access to Rarely Typical, by Gerry Langan at itsgerrylangan.substack.com/subscribe

Not going to lie, the video on this is subpar, but if you’re listening to the podcast, at least that works! Ha. I promised myself this year I would worry less about curating the content and just produce the content.ALSO, LOL, this is season 4, whoops.So here it is, a full rundown of how the transition went from the CADD MS3 pump to the new Remunity Pro pump.Thanks for listening and subscribing, follow along for more! Read the blog post for this podcast episode here: Podcast Episode Blog postg. Get full access to Rarely Typical, by Gerry Langan at itsgerrylangan.substack.com/subscribe

In this amazing episode, I sit down with my friend Eric Borstein, the founder of Where Is EB?, to talk about life with Pulmonary Arterial Hypertension from a perspective the community does not often get to hear. PAH overwhelmingly affects women, so Eric walks us through what it has been like to navigate a rare disease in a demographic that rarely sees itself represented.Eric shares the story behind his diagnosis, the uncertainty that came with it, and the moment he realized he needed a path forward that felt empowering, not limiting. Walking became that path. We talk about how putting one foot in front of the other shifted his physical health, mental health, and outlook on what is possible while living with PAH.We also unpack the emotional weight of being a male patient in a predominantly female disease space, the pressure to appear strong, and how vulnerability became a lifeline. Eric opens up about mental health, identity, and the balance between being hopeful and being honest about the hard days.Whether you live with PAH or any chronic illness, love someone who does, or simply want to hear an inspiring and deeply human story about resilience and redefining strength, this conversation will stay with you.Thanks for joining me, EB, you’re the best!Links: Where is EB? | Eric’s Nonprofit OrganizationFollow Eric on Instagram here!Disclaimer: I’m not a medical professional, just a professional patient. Rarely Typical is based on my personal experiences and is not intended to be medical advice. Always consult with a qualified healthcare professional for any medical concerns or decisions. Get full access to Rarely Typical, by Gerry Langan at itsgerrylangan.substack.com/subscribe

In this episode of Rarely Typical, I sit down with my friend Jenna to talk all things traveling with Pulmonary Arterial Hypertension (PAH). When you live with a rare disease, the idea of traveling can feel overwhelming — from packing medications and managing oxygen, to handling airports and unexpected flares. But over the years, both Jenna and I have learned how to make travel not only doable but genuinely enjoyable again.We share how our confidence has grown through experience, the lessons we’ve learned the hard way, and how we’ve each adapted our routines so we can continue exploring the world. You’ll hear our best practical tips for preparing for trips, managing hiccups on the go, and setting yourself up for success when things don’t go as planned.If you’ve ever thought, “I wish I could travel, but my illness makes it too complicated,” this episode will remind you that with the right preparation, intentionality and mindset, it’s absolutely possible.What You’ll Learn:* How to prepare for travel with medications, oxygen, and medical equipment* What to communicate with your doctor before travel* How experience helps reduce fear and builds travel confidence* Tips for finding joy and flexibility when things go off-planFollow Jenna on Instagram at @travelingwithoutboundariesDisclaimer: I’m not a medical professional, just a professional patient. Rarely Typical is based on my personal experiences and is not intended to be medical advice. Always consult with a qualified healthcare professional for any medical concerns or decisions. Get full access to Rarely Typical, by Gerry Langan at itsgerrylangan.substack.com/subscribe

When you’re first diagnosed—or even when something just feels “off”—your journey often starts in your primary care doctor’s office. But what happens when your primary care provider suspects something more complex and refers you to a specialist? In this episode of Rarely Typical, I sit down with Dr. Peter Hountras and Stacy Hountras, NP, to break down what that process really looks like.We talk about how and why patients are referred to specialists (in my case a pulmonary arterial hypertension (PAH)) why tests often get repeated when you transition to specialty care, and what you can expect at those first few appointments. For patients and caregivers, this episode offers a clear roadmap to navigating referrals, and for providers, it’s a reminder of how overwhelming this process can feel for patients walking through it for the first time.If you’ve ever wondered: Why am I seeing another doctor? Why are they redoing my tests? What should I expect from this referral? — this episode will give you clarity and reassurance.Whether you’re a patient newly referred to a specialist, a caregiver helping someone through the process, or a provider wanting to improve the referral experience, this conversation is filled with practical insights and encouragement.Disclaimer: I’m not a medical professional, just a professional patient. Rarely Typical is based on my personal experiences and is not intended to be medical advice. Always consult with a qualified healthcare professional for any medical concerns or decisions. Get full access to Rarely Typical, by Gerry Langan at itsgerrylangan.substack.com/subscribe

In this episode of Rarely Typical, I sit down with friends in the PAH community, Chelsea + Lisa, to talk about what it really looks like to balance work and Pulmonary Arterial Hypertension. We share candid conversations about the challenges of managing symptoms, juggling frequent doctor’s appointments, and even recovering from surgeries—all while trying to maintain a career.We dive into the importance of workplace accommodations, the role of flexibility, and how to have honest conversations with employers about your needs. We also share practical advice for others navigating their own careers while managing PAH—reminders that you can still find purpose and meaning in your work, even if it looks different than you first imagined.Whether you’re newly diagnosed, in the middle of your career, or supporting someone with PAH, this conversation offers both hope and tangible tools for making work more sustainable alongside chronic illness.Disclaimer: I’m not a medical professional, just a professional patient. Rarely Typical is based on my personal experiences and is not intended to be medical advice. Always consult with a qualified healthcare professional for any medical concerns or decisions. Get full access to Rarely Typical, by Gerry Langan at itsgerrylangan.substack.com/subscribe

Seven years ago, what I thought would be a quick trip to the ER turned into a life-changing moment—a diagnosis that would forever alter my life. In this special episode, I’m reflecting on my 7 year diagnosi-versary and the journey that’s unfolded since.I share how I first stepped into advocacy, what pushed me to use my voice, and the lessons I’ve learned along the way—both about myself and about living with a chronic, life-threatening illness. I also talk openly about facing mortality at a young age, and how answering the question, “What’s your goal?” shaped not only my advocacy but the way I choose to live my life every day.If you’ve ever wondered why I do what I do, or how I got started doing this, this episode is me sharing my heart with you.✨ What you’ll hear in this episode:* Why I started advocating and what advocacy has taught me* The biggest lessons I’ve learned in 7 years of living with PAH* How facing mortality gave me clarity on my purpose* What I’ve discovered about hope, resilience, and legacyDisclaimer: I'm not a medical professional, just a professional patient. Rarely Typical is based on my personal experiences and is not intended to be medical advice. Always consult with a qualified healthcare professional for any medical concerns or decisions. Get full access to Rarely Typical, by Gerry Langan at itsgerrylangan.substack.com/subscribe

What does it look like to choose worship in the middle of your storm? In this episode, I sit down with Brinnae Keathley from Red Rocks Worship to talk about finding joy in the middle of hardship, and how God meets us right in our mess. Brinnae shares her own journey of faith, music, and holding onto hope when circumstances don’t look like what you imagined.Together, we explore how worship isn’t about pretending everything is perfect, but about bringing our whole selves—pain, questions, and all—before God. This conversation is an encouragement for anyone walking through a difficult season, reminding us that joy can exist alongside grief and that God doesn’t wait for us to be “put together” before He shows up.What You’ll Learn in This Episode:* How worship can be a lifeline during times of suffering.* Why joy isn’t the absence of hardship, but something we can discover in the middle of it.* Practical ways to feel God in your mess instead of waiting until life feels “cleaned up.”* The power of honesty, vulnerability, and community in faith.Resources & Links:* Follow Red Rocks Worship here.* Listen to Red Rocks Worship on Spotify or Apple Music.* Check out Red Rock Worship’s upcoming tour here.* Connect with me on Instagram: @itsgerrylangan. Get full access to Rarely Typical, by Gerry Langan at itsgerrylangan.substack.com/subscribe

In this powerful and deeply personal episode, I sit down with my friend Lisa to share a story that very few people — and even fewer medical professionals — truly understand. Lisa lives with pulmonary arterial hypertension (PAH) and a congenital heart defect, and she faced one of the most high-risk situations imaginable: pregnancy with PAH.Lisa walks us through her journey, from navigating her congenital heart defect to the moment she learned she was pregnant, and the critical role her PAH pregnancy specialist team played in saving her life and her baby’s. She opens up about the physical toll, the emotional rollercoaster, and the lasting impact on her body and family.While her story has a happy ending, Lisa is candid about the realities: this is not something she would recommend to others living with PAH because of the immense risks and sacrifices involved. Her honesty offers a rare, unfiltered look at why having the right medical team isn’t just important — it’s the difference between life and death.If you’ve ever wondered what pregnancy with PAH truly looks like, or why specialized care matters so much in rare diseases, this episode is a must-listen.Key Takeaways* Pregnancy with PAH is extremely high-risk and requires a medical team experienced in both PAH and maternal-fetal medicine.* Specialist care saves lives — Lisa credits her survival (and her baby’s) to her highly skilled, coordinated care team.* Long-term impact is real — pregnancy can have lasting effects on heart and lung health for people with PAH and can in worst case scenarios result in life-threatening situations for both the mother and the baby.* Personal choice matters — while Lisa’s story has a positive ending, she stresses that it’s not a path she would recommend due to the risks.Helpful Links* Pulmonary Hypertension Association – Pregnancy and PH* American Heart Association – Congenital Heart Defects* PAH Resources for Patients Get full access to Rarely Typical, by Gerry Langan at itsgerrylangan.substack.com/subscribe

In the season 2 finale of Rarely Typical, I sit down with my friend Shanna, the person who first encouraged me to pursue a clinical trial. With experience in three different trials, Shanna brings wisdom, honesty, and encouragement to the table.We talk about:* How her clinical trial experiences shaped her journey with chronic illness* What to look out for and take notes on when researching trial opportunities* Why it’s important to fully understand what you’re getting into before committing* The role of courage, hope, and advocacy when considering trialsShanna’s story is a reminder that clinical trials aren’t just about research, they’re about real patients, real choices, and real lives. If you’ve ever wondered whether a clinical trial could be right for you, this conversation offers both practical tips and lived experience perspective.Thank you guys for another amazing season of Rarely Typical!I will be back on October 3rd with season 3!Disclaimer: I'm not a medical professional, just a professional patient. Rarely Typical is based on my personal experiences and guest personal experience and is not intended to be medical advice. Always consult with a qualified healthcare professional for any medical concerns or decisions. Get full access to Rarely Typical, by Gerry Langan at itsgerrylangan.substack.com/subscribe

In this episode of Rarely Typical, I’m pulling back the curtain on my own journey as a participant in the sotatercept (Winrevair) clinical trial for Pulmonary Arterial Hypertension (PAH).I share what a clinical trial actually is, why it’s such an important step in advancing treatment options, and why the sotatercept trial had the PAH community buzzing with hope. From there, I walk you through my own experience—the excitement, the setbacks, and yes, the exhausting parts too.It hasn’t all been smooth sailing. There have been hiccups, moments of frustration, and times I questioned if I could keep going. But more than anything, this trial has been life-changing for me, and I want to encourage others to consider participating in research that could change lives—yours and others’.If you’ve ever wondered what it’s really like to be part of a clinical trial, or you’re curious about what this breakthrough treatment means for the PAH community, this episode is for you.Listen in to hear:* What a clinical trial is (and isn’t)* Why sotatercept is such a big deal in PAH treatment* The real-world challenges and rewards of participation* How research can feel exhausting… and still be worth it* Why I believe in saying “yes” to the opportunity to make a difference🎧 Listen now and join me as I share one of the most impactful chapters of my PAH journey. Get full access to Rarely Typical, by Gerry Langan at itsgerrylangan.substack.com/subscribe

In this episode of Rarely Typical, Gerry sits down with her own PH specialist, Dr. John Moss, to talk all things clinical trials. Together, they unpack the importance of participating in research, how clinical trials work, and the patient-doctor collaboration that makes it all possible.Dr. Moss shares his insight from years in research and care, and Gerry reflects on how clinical trials—especially Sotatercept (Winrevair)—have drastically changed the trajectory of her life with Pulmonary Arterial Hypertension (PAH).Whether you're a patient, caregiver, or healthcare provider, this conversation demystifies clinical research and explains why trials should never be a last resort—but instead, a pathway to hope, innovation, and better outcomes.🔑 Key Takeaways:* Why clinical trials are essential for rare diseases like PAH* The impact of patient participation on future treatment options* What it’s like to be in a clinical trial from both the doctor and patient side* Breaking the myth that clinical trials are only for the "end of the line"🔗 Resources Mentioned:* ClinicalTrials.gov – Find active and recruiting trials Get full access to Rarely Typical, by Gerry Langan at itsgerrylangan.substack.com/subscribe

In this honest and deeply relatable episode of Rarely Typical, Gerry is joined by her friend and fellow rare disease mom, Chelsea Price, for a raw conversation about parenting while living with a chronic illness.Together, they talk about:* What it looks like to show up as a parent on the hard days* How disease progression affects energy, routines, and mental load* The emotional weight of watching your health shift while trying to maintain normalcy for your kids* Giving yourself permission to parent differently, with grace and flexibility* How progression can affect you mentallyChelsea and Gerry open up about the grief and heaviness that can come with declining health, and how they manage expectations—both from themselves and others—while raising children with compassion and joy.They also touch on the hope that comes from clinical trials, new medications on the horizon, and why advocating for themselves is part of how they fight for their families.🔑 Key Takeaways:* Parenting with a chronic illness looks different—but it’s still powerful* Disease progression can be emotionally and physically exhausting, and it’s okay to grieve* There’s no one “right” way to be a good parent—especially when you’re navigating health challenges* Clinical trials aren’t just about patients—they’re about giving families more time, stability, and hope🔗 Resources Mentioned:* ClinicalTrials.gov – For patients interested in learning about or joining a clinical trial* Gerry’s Blog Post on PAH Treatments* Find Chelsea on Instagram Get full access to Rarely Typical, by Gerry Langan at itsgerrylangan.substack.com/subscribe

In this powerful episode of Rarely Typical, I sit down with my dear friend Jordan to talk about a topic that is often overlooked—what it’s like to raise a child with a chronic illness when you don’t have one yourself. Jordan opens up about her daughter’s diagnosis with Marfan syndrome, a rare connective tissue disorder, and the emotional weight of navigating this new world as both a caregiver and a mother.We explore the unique tension that comes with being strong for your child while silently carrying your own fears. Jordan shares how parenting is already full of challenges—but adding a rare disease into the mix reshapes everything: how you advocate, how you comfort, how you explain the unexplainable to a child.From managing appointments and learning the medical language, to preserving childhood joy and building resilience, Jordan gives us an honest look into the complexity and strength of caregiving from a parent’s perspective.💡 Episode Takeaways:* What it’s like to process your child’s diagnosis when you’re not the patient* The emotional balance of being a caregiver and a parent* How chronic illness changes family dynamics* The power of showing up for your child, even when you're unsure* Why empathy and strength aren’t mutually exclusive🔗 Resources:* Learn more about Marfan Syndrome* Caregiver support: National Alliance for Caregiving* Rarely Typical, How to Support Your Chronically ill friends Get full access to Rarely Typical, by Gerry Langan at itsgerrylangan.substack.com/subscribe

In this heartfelt and deeply needed episode, I’m joined by my best friend and licensed therapist, Livia Kubica, to talk about what true support looks like when your friend is living with a chronic illness.We break down the real meaning of holding space, why empathy matters more than fixing things, and how to be a reliable presence—not just in words, but in action. We talk about the emotional labor that comes with being vulnerable and how to be the kind of friend who creates safety, trust, and compassion.Whether you're a caregiver, a friend, or just someone who wants to better understand how to support a loved one through the hard stuff, this episode is your invitation to do it with more heart and more intention.💬 Key Takeaways:* Supporting someone with chronic illness is more about presence than perfection.* "Holding space" means allowing someone to be fully seen and heard—without needing to fix them.* Empathy, consistency, and intentional care go a long way in helping someone feel less alone.* If you say you’re going to show up, show up—even in small ways.* Finding the right community can make all the difference in long-term mental and emotional wellbeing.📌 Resources Mentioned:* Made New Ministries – Livia’s Website* Spoon Theory by Christine Miserandino: ButYouDontLookSick.com✨ Don’t forget:If this episode resonates with you, send it to someone who could use it, like it or leave a review! Get full access to Rarely Typical, by Gerry Langan at itsgerrylangan.substack.com/subscribe

In this episode, Gerry sits down with internal medicine physician Dr. Shaila Siraj to talk about something we don’t talk about enough in healthcare: compassion. This episode explores how empathy and human connection must flow both ways—from doctor to patient, and from patient to doctor.They dive into what it really means to create emotional safety in a clinical space, how doctors can stay grounded in compassion without burning out, and how patients can hold space for the humanity of their providers while still advocating for themselves.Whether you're a provider, patient, or someone in between, this conversation will leave you thinking about how we all show up in the exam room—and how compassion can be the bridge that changes everything.💡 Key Takeaways:* Compassion isn’t just a doctor’s job—it’s a shared space between two humans.* Burnout is real, and empathy can be a grounding tool rather than a draining one.* Patients have the right to feel emotionally safe, seen, and heard.* Doctors need emotional support too—they’re human first.* When both sides come to the table with grace, healing happens beyond prescriptions.🎧 Resources & Mentions:* Compassionomics: The Science and Practice of Caring, NIH* Rarely Typical podcast episode on Medical Gaslighting (for more patient advocacy tips) Get full access to Rarely Typical, by Gerry Langan at itsgerrylangan.substack.com/subscribe

In this episode of Rarely Typical, I sit down with two of the doctors who have played pivotal roles in my journey—Dr. Peter Hountras, my diagnosing physician, and Dr. John Moss, my current PH specialist. We dive into the power of collaboration in medicine and how compassionate care and teamwork between providers can radically improve a patient’s experience and outcome.We talk about:* How collaboration between specialists improves continuity of care* What compassion looks like in real-time clinical settings* The importance of communication between doctor and patient* How their partnership gave me better, more personalized treatment* Why trust and respect in the doctor-patient relationship changes everythingThis episode is full of practical wisdom—for patients looking to build better relationships with their providers, and for providers seeking to improve patient-centered care.🔑 Key Takeaways:* Collaborative care saves time, confusion, and often—lives* Patients thrive when they’re heard, believed, and involved in their care* Compassion isn’t extra—it’s essential in medicine* The doctor-patient relationship is a partnership, not a hierarchy🔗 Resources:* Learn more about Pulmonary Arterial Hypertension: phassociation.org* Clinical trials info: clinicaltrials.gov* Connect with me on Instagram: @itsgerrylangan Disclaimer: I'm not a medical professional, just a professional patient. Rarely Typical is based on my personal experiences and is not intended to be medical advice. Always consult with a qualified healthcare professional for any medical concerns or decisions. Get full access to Rarely Typical, by Gerry Langan at itsgerrylangan.substack.com/subscribe

In this heartfelt episode of Rarely Typical, I’m joined by not only one of my best friends, but also licensed therapist Livia Kubica, for a deep and honest conversation about mental health in the context of chronic illness and rare disease.We talk about the emotional toll of receiving a diagnosis, the grief that follows, and how chronic illness can affect every part of your mental well-being. Livia offers practical coping tools and therapeutic strategies that anyone navigating illness can use—whether you're newly diagnosed or years into your journey.We also unpack the importance of community, the healing power of validation, and how grief and healing can coexist. This episode is for anyone who's ever felt overwhelmed, isolated, or emotionally exhausted from their health journey.Key Topics:* How diagnosis impacts mental health* Coping strategies for chronic illness* When to seek help—and how* Faith, friendship, and healing* The role of therapy in your medical journeyResources & Links:* Made New Ministries by Livia Kubica: www.madenewministries.com* S1:E4, The Power of Advocacy: How Community Support Transforms the Chronic Illness JourneyDisclaimer: I'm not a medical professional, just a professional patient. Rarely Typical is based on my personal experiences and is not intended to be medical advice. Always consult with a qualified healthcare professional for any medical concerns or decisions. Get full access to Rarely Typical, by Gerry Langan at itsgerrylangan.substack.com/subscribe

Welcome back!When you live with a chronic illness, it’s easy to feel like your diagnosis defines you. In this heartfelt Season 2 premiere of Rarely Typical, Gerry explores the importance of remembering who you are outside of your disease. Because while chronic illness may shape our daily lives, it is not the sum total of who we are.Gerry reflects on her own journey of rediscovery after being diagnosed with pulmonary arterial hypertension and congestive heart failure, and shares how she learned to honor the version of herself that existed before—and still exists beyond—her illness. Through personal letters from friends and powerful moments of self-reflection, this episode is a reminder that you are more than your medical chart.She also dives into:* How negative self-talk distorts our identity* Practical ways to reconnect with yourself* The healing power of community reflections* Why your story deserves to include joy, purpose, and the whole youWhether you’re newly diagnosed or years into this journey, this episode offers encouragement to reclaim your identity and start this season grounded in self-worth and truth.🧠 Key Takeaways:* Chronic illness is part of your story, not your whole identity* Reconnecting with past passions can ground you in joy* Positive reflection from others can help you remember who you are* Practical tools to combat negative self-talk Get full access to Rarely Typical, by Gerry Langan at itsgerrylangan.substack.com/subscribe

In this mini-episode, Gerry reflects on the end of Season 1 of Rarely Typical. She shares her deep gratitude for every listener, guest, and supporter who has helped bring this podcast to life—and teases the exciting things to come in Season 2.But more than anything, this episode is a reminder: it’s okay to pause.In a world that praises busyness, Gerry gets real about choosing stillness in a season that demands a lot. She's intentionally stepping back to honor her family, her health, and her joy—and wants to encourage you to do the same when needed. Because success isn't always about hustle... sometimes, it's about healing and presence.What You’ll Hear:* A huge thank you for showing up and being part of Season 1* Why taking a break isn’t quitting—it's caring* The false link between busyness and worth* A gentle reminder to prioritize the life you're living, not just the goals you're chasing📝 Key Takeaway:You are allowed to rest. You’re allowed to say no. And you’re allowed to enjoy your life—even in the middle of a chronic illness journey.📲 Stay connected:Follow Gerry on Instagram at @itsgerrylangan for updates, behind-the-scenes, and more rarely typical encouragement. 💙 Get full access to Rarely Typical, by Gerry Langan at itsgerrylangan.substack.com/subscribe

In this powerful and heartfelt episode of Rarely Typical, I sit down with one of my best friends, Sarah Evans—an osteosarcoma survivor and amputee—to talk about what it’s like living with a visible disability versus an invisible one.We unpack the unique challenges and misconceptions that come with both experiences—from stares and assumptions to being overlooked entirely. Whether your illness is visible or not, there's a shared emotional weight and societal misunderstanding that connects us.We talk about advocacy, friendship, and how important it is to give others grace—because disability doesn't look one way. This episode is full of honesty, laughter, and a reminder that no matter how different our diagnoses may be, the need to feel seen and understood is universal.🎧 Listen if you’ve ever felt misunderstood in your illness or want to better understand the people around you.Key Topics:* Visible vs. invisible disability dynamics* Navigating daily life as a survivor and patient* Learning to own your story unapologetically* The power of community and friendshipResources & Links:* Move United* Global Genes – Rare Disease Support* NORD – National Organization for Rare Disorders Get full access to Rarely Typical, by Gerry Langan at itsgerrylangan.substack.com/subscribe

In this heartfelt episode of Rarely Typical, I sit down with my diagnosing doctor, Dr. Hountras, to share both sides of the journey that led to my pulmonary arterial hypertension (PAH) diagnosis. We dive into how divine timing played a role—how God had everything in motion long before either of us arrived in Colorado. From God’s intricate planning to the importance of collaborative care, this conversation offers insight into the emotional and spiritual layers of rare disease diagnosis and why building a trustworthy doctor-patient relationship matters more than ever. Whether you're newly diagnosed, a caregiver, or navigating chronic illness, this episode will remind you that you're not alone—and that your story is part of something bigger.Key Takeaways:* Faith and divine timing can guide even the most uncertain medical journeys.* The doctor-patient relationship should feel like a partnership—not a power imbalance.* It’s possible to find providers who truly listen, care, and connect with your experience.* Sharing your story can open unexpected doors—for healing, for advocacy, and for others.Resources:📌 Pulmonary Hypertension Association (PHA) – Find specialists, patient resources, and education: https://phassociation.org📌 Find a PH Care Center – Accredited centers with expertise in PH: https://phassociation.org/phcarecenters Get full access to Rarely Typical, by Gerry Langan at itsgerrylangan.substack.com/subscribe

In this heartfelt episode of Rarely Typical, my husband, Jason, and I sit down to reflect on the unexpected journey that led us to Colorado—a move that, in hindsight, was divinely orchestrated for me to receive my life-changing diagnosis. We discuss how this path has strengthened our faith, tested our vows, and deepened our understanding of what it truly means to be a caregiver and a partner. Jason shares his perspective on stepping into the role of a caregiver, the challenges and emotional weight it carries, and how he’s found purpose in supporting me through this journey.Key Takeaways:* Trusting That God Had a Plan – Looking back, we can see how every step was preparing us for what was ahead. God’s timing was perfect, even when it felt uncertain.* In Sickness and In Health: Living Our Vows – Marriage is tested in unexpected ways, and we share how we’ve navigated those challenges together.* The Vital Role of a Caregiver – Caregivers often go unseen, but their role is essential. Jason talks about what it’s really like to walk this path and how he’s learned to advocate alongside me.Resources & Links: 📌 Caregiver Support Resources: https://www.caregiver.org📌 PHA Caregiver Support Group: https://phassociation.org/caregiversJoin the Conversation: Have you or a loved one taken on the role of a caregiver? We’d love to hear your story. Share your thoughts in the comments or connect with Gerry on social, @itsgerrylanganDisclaimer: Rarely Typical is based on my personal experiences and is not intended to be medical advice. Always consult with a qualified healthcare professional for any medical concerns or decisions. Get full access to Rarely Typical, by Gerry Langan at itsgerrylangan.substack.com/subscribe

In this episode of Rarely Typical, I sit down with my diagnosing doctor, Dr. Hountras, to talk about the exciting advancements in pulmonary arterial hypertension (PAH) treatments. We dive into the world of clinical trials, the importance of research, and four new drugs making waves in the PAH community: Opsynvi, Yutrepia, Seralutinib, and Sotatercept (Winrevair).We discuss how these treatments work, who they might benefit, and why clinical trials are crucial—not just as a last resort but as a way to advance PAH care for future patients. Whether you're newly diagnosed or have been managing PAH for years, this episode is packed with valuable information on the latest treatment options.Resources & Links📌 Opsynvi (Macitentan/Tadalafil Combination): https://www.opsynvi.com📌 Yutrepia (Inhaled Treprostinil): https://yutrepia.com📌 Seralutinib (Inhaled PDGFR Inhibitor): https://www.gossamerbio.com/pipeline/seralutinib📌 Seraluntinib PROSERA study: https://proserastudy.com/📌 Sotatercept (Winrevair): https://www.winrevair.com📌 Find PAH Clinical Trials: https://clinicaltrials.govHave thoughts on these new PAH treatments? Let’s keep the conversation going—leave a comment and follow me on social media! 💜Disclaimer: Rarely Typical is based on my personal experiences and is not intended to be medical advice. Always consult with a qualified healthcare professional for any medical concerns or decisions. Get full access to Rarely Typical, by Gerry Langan at itsgerrylangan.substack.com/subscribe

Episode OverviewMedical gaslighting is a painful reality for many patients, especially those with chronic and rare diseases. In this episode, I share my personal experiences with medical negligence and the long-term trauma it caused me. From being dismissed and unheard to doubting my own symptoms, medical gaslighting left me with lasting medical PTSD and self-doubt.But there’s another side to this story—one of relief, healing, and hope. I talk about the power of finding doctors who listen, collaborate, and respect my lived experience. Having a medical team that values my input has been life-changing, and it’s a reminder that good healthcare providers do exist.If you’ve ever been dismissed, told your symptoms were "just anxiety," or felt like you had to prove your illness, you are not alone. Your experiences are valid, and sharing them can help create change. In this episode, we explore the emotional toll of medical gaslighting, how to rebuild trust in yourself, and the importance of advocating for compassionate, patient-centered care.What You’ll Hear in This Episode:* My personal experiences with medical gaslighting and negligence* The emotional and mental toll of medical PTSD and self-doubt* How self-gaslighting develops from years of dismissal* The difference it makes to have doctors who collaborate and listen* Why sharing your experience can help others and drive change in the medical fieldCall to ActionIf this episode resonated with you, I want you to know:* Your medical experience is VALID* Your symptoms are REAL* Your story MATTERSShare this episode with someone who needs to hear it. Leave a review. Spread the word.LinksHere’s a link to Ilana Jacqueline’s book on medical gaslighting:📌 "Surviving Medical Gaslighting" by Ilana Jacqueline: https://www.simonandschuster.com/books/Surviving-Medical-Gaslighting/Ilana-Jacqueline/9781507219185Trigger WarningThis episode discusses medical trauma, gaslighting, and mental health challenges. Please take care of yourself and listen when you feel safe and supported.Disclaimer: This podcast is for informational purposes only and is not a substitute for medical professional advice. Get full access to Rarely Typical, by Gerry Langan at itsgerrylangan.substack.com/subscribe

Pulmonary Arterial Hypertension (PAH) treatment isn’t one-size-fits-all, and trust me, I’ve tried it all (almost). In this episode of Rarely Typical, I’m breaking down the different treatments I’ve been on—IV pump therapy, oral medications, subcutaneous pump therapy, and the clinical trial injection I’m currently on. I’ll share the pros, the cons, and everything in between, plus what I’ve learned about managing side effects.If you or a loved one are navigating PAH treatments, this episode is packed with insights, and real talk to remind you that you’re not alone in this.What You’ll Learn in This Episode:✅ The different PAH treatments I’ve tried and how they’ve worked for me✅ The reality of IV pump therapy went for me✅ Oral meds and how my experience was✅ Subcutaneous pump therapy and how I manage site pain✅ What works for me now and how I manage it allResources & Links:📌 PHA Treatment Guidelines: https://phassociation.org/treatments📌 Find a PH Specialist: https://phassociation.org/phcarecenters/accredited-centers/If this episode helped you, don’t forget to subscribe, leave a review, and share it with someone who needs to hear it!Disclaimer: Rarely Typical is based on my personal experiences and is not intended to be medical advice. Always consult with a qualified healthcare professional for any medical concerns or decisions. Get full access to Rarely Typical, by Gerry Langan at itsgerrylangan.substack.com/subscribe

Living with a rare disease can feel isolating, but finding a strong community and embracing advocacy can be life-changing. In this episode of Rarely Typical, I dive into the power of connection—how surrounding yourself with the right people can impact not only your healthcare journey but also your emotional and mental well-being.We’ll talk about why advocacy matters, why I got started, how impactful it was for me to build a support system, and the unexpected ways community can lift you up when you need it most. If you’ve ever felt alone in your diagnosis, this episode is here to remind you: you don’t have to do this by yourself.What You’ll Learn in This Episode:✅ Why advocacy is essential for rare disease patients✅ How community support can ease the emotional burden of chronic illness✅ The mental health benefits of finding “your people”✅ Practical ways to connect with others who understand your journeyResources & Links:📌 Find a rare disease community through NORD: https://rarediseases.org📌 Connect with the Pulmonary Hypertension Association: https://phassociation.org📌 Join online advocacy groups and support networksIf this episode resonates with you, don’t forget to subscribe, leave a review, and share it with someone who needs to hear it. Let’s keep building a community where no one feels alone. 💜Disclaimer: Rarely Typical is based on my personal experiences and is not intended to be medical advice. Always consult with a qualified healthcare professional for any medical concerns or decisions. Get full access to Rarely Typical, by Gerry Langan at itsgerrylangan.substack.com/subscribe

Living with a rare disease comes with unique challenges, from misdiagnosis to navigating complex healthcare systems. In this episode, we dive into the realities of rare disease life, the importance of advocacy, and finding hope amid the uncertainty.What You’ll Learn in This Episode:✅ The challenges of living with a rare disease like delayed diagnoses✅ Personal stories about how I struggled with diagnosis✅ Why self-advocacy is important for rare disease patients✅ Tips on how to take preventative measures and protect yourselfDisclaimer: Rarely Typical is based on my personal experiences and is not intended to be medical advice. Always consult with a qualified healthcare professional for any medical concerns or decisions. Get full access to Rarely Typical, by Gerry Langan at itsgerrylangan.substack.com/subscribe

In this heartfelt episode of Rarely Typical, Gerry opens up about the profound lessons pulmonary arterial hypertension (PAH) and congestive heart failure have taught her. She shares her journey from a young, seemingly invincible 27-year-old to finding strength, purpose, and healing through life’s toughest challenges. Through humor, honesty, and faith, Gerry dives into the power of community, the beauty in the mess, and how chronic illness reshaped her perspective. Tune in for inspiration, real talk, and a reminder that even in the hardest seasons, hope and growth are possible.Disclaimer: Rarely Typical is based on my personal experiences and is not intended to be medical advice. Always consult with a qualified healthcare professional for any medical concerns or decisions.Rarely Typical is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber Get full access to Rarely Typical, by Gerry Langan at itsgerrylangan.substack.com/subscribe

In this episode of Rarely Typical, host Gerry dives into the heartbreaking realities of the American healthcare system for chronically ill patients. She shares her personal experiences with both poor and exceptional medical care, highlighting the shocking disparities that exist. Gerry discusses the financial burdens, startling statistics about healthcare costs, and the exhausting fight many patients face to receive proper treatment. She emphasizes the importance of advocacy, self-advocacy, and pushing for a healthcare system where compassionate, comprehensive care should be the standard—not a specialty. Tune in for an honest, eye-opening conversation about why the system needs to change and how you can be part of that change.Get involved by sharing your storyNORD Rare:https://rarediseases.org/share-your-story/NIH.gov:https://www.nih.gov/about-nih/who-we-are/share-our-storiesChronic Disease Coalition:https://chronicdiseasecoalition.org/take-action/share-your-storyPulmonary Hypertension Association:https://phassociation.org/get-involved/share-your-story/Disclaimer: Rarely Typical is based on my personal experiences and is not intended to be medical advice. Always consult with a qualified healthcare professional for any medical concerns or decisions.Rarely Typical is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber. Get full access to Rarely Typical, by Gerry Langan at itsgerrylangan.substack.com/subscribe

Welcome to Rarely Typical, this podcast will dive into life with chronic illness, rare disease, and everything in between. Hosted by Gerry Langan, a pulmonary hypertension and heart failure advocate, this show offers honest conversations, practical tips, and a dose of hope to help you navigate the unpredictable. Whether you're a patient, a caregiver, or just curious, join us for real stories, expert insights, and a reminder that life can be beautiful—even when it’s Rarely Typical.Like, subscribe and comment.Thank you for your support,G Get full access to Rarely Typical, by Gerry Langan at itsgerrylangan.substack.com/subscribe