Show Notes
What happens when trigeminal neuralgia runs through generations of a family? In this deeply personal and meaningful conversation, I speak with Anne B. Ciemnecki, MA, Secretary of the Board of Directors of the Facial Pain Association (FPA), about her lived experience with trigeminal neuralgia and how it shaped her path into advocacy and service. Anne shares what it has meant to grow up in a family where three generations have been affected by trigeminal neuralgia, and how witnessing the impact of this condition firsthand inspired her to become actively involved in supporting others facing neuropathic facial pain. Her journey is not only one of resilience but also of purpose. Today, Anne plays a key role within the Facial Pain Association, helping advance research and awareness, and currently leading the FPA Facial Pain Registry initiative—an important effort that gathers patient data to help researchers better understand neuropathic facial pain and improve treatment options. In our conversation we talk about: ✨ Anne’s personal family experience with trigeminal neuralgia ✨ What living with a rare and often misunderstood condition can feel like ✨ Why community and connection matter so much for patients ✨ The work of the Facial Pain Association and the support it offers ✨ The importance of the Facial Pain Registry in advancing research ✨ Resources available for patients, families, and caregivers For many people living with trigeminal neuralgia or neuropathic facial pain, the journey can feel isolating. Anne’s story is a reminder that there is strength in community and that organizations like the Facial Pain Association are working tirelessly to ensure no one has to face this diagnosis alone. If you or someone you love is living with facial pain, this episode will help you discover resources, connection, and hope. 🔗 CONNECT WITH THE FACIAL PAIN ASSOCIATION 🌐 Website: https://www.facepain.org 🧠 Facial Pain Registry: https://www.facepain.org/facialpainregistry
📖 My book: But You Look Just Fine: My Journey to Rediscover Joy Amidst Chronic Pain and Invisible Illness https://www.micheleroys.com/book 🎧 Subscribe to The Michele Roys Show for conversations on resilience, healing, and finding joy even in the hardest seasons. #TrigeminalNeuralgia #FacialPainAssociation #TNCommunity #NeuropathicPain #RareDiseaseAwareness #InvisibleIllness #ChronicPainSupport #TheMicheleRoysShow
More from The Michele Roys Show
What if, even in the middle of a difficult season, there is still something beautiful waiting for you to notice? When you’re living with chronic pain, grief or life’s unexpected challenges, it can be easy to focus on everything that’s going wrong. But sometimes, a small moment of gratitude can help us reconnect with the goodness that is still around us. In this solo episode of The Michele Roys Show, I share how a simple walk along the Cliffs of Kilkee in Ireland reminded me of the power of gratitude. Sitting by the ocean, feeling the sun on my face and noticing the beauty of God’s creation helped me become present, even while navigating pain and bereavement. Gratitude isn’t about pretending life is easy or ignoring what hurts. It’s about making room to notice the good alongside the difficult. In this episode, we explore: How gratitude can shift our attention towards the good around us
What if the voice telling you to do more, try harder and never give up is the very voice keeping you exhausted? In this episode, I sit down with integrative psychotherapist Tara McSweeney to talk about self-compassion, the inner critic, and why slowing down can feel so hard when you’ve spent your life achieving and putting everyone else first. We talk about: Why high achievers struggle when they can no longer keep pushing
October is Facial Pain Awareness Month, and October 7 is Trigeminal Neuralgia Awareness Day. In this special episode of The Michele Roys Show, I’m shining a light on trigeminal neuralgia — an invisible condition that can cause severe facial pain, including shooting, stabbing, burning and electric-shock-like sensations. For those of us living with TN, everyday things that most people never think twice about — a breeze on your face, brushing your teeth, combing your hair, talking or eating — can sometimes trigger pain. And yet, from the outside, you may look completely fine. 💙 LIGHT IT UP TEAL — OCTOBER 7Around the world, buildings and landmarks are lighting up teal for Trigeminal Neuralgia Awareness Day. Here in Ireland, I talk about some of the incredible places joining the campaign, including University of Limerick, Cork Airport, Kilkenny Castle, Rock of Cashel, St Stephen’s Green Monument and EPIC/The Custom House area — and there are landmarks lighting up around the world too. If you see somewhere lit up teal, take a photo, tag me and share it. Let's help shine a light on trigeminal neuralgia and show people living with facial pain that they are not alone. This episode is about more than awareness. It's about the reality of invisible pain. It's about being believed. It's about compassion and understanding. And it's about community — because none of us should have to walk through difficult seasons alone. If you live with trigeminal neuralgia or another facial pain condition, share your story. Your voice may help someone else realise they aren't the only one. And if you know someone living with invisible pain, reach out, ask questions and see how you can support them. You are not alone. 💙 Watch. Share. Raise awareness. Light it up teal. So today, if you see something lit up teal, take a picture. Share it. Tag us @michroys @facialpainassoc Add #LightUpTeal #TrigeminalNeuralgiaAwarenessDay #TrigeminalNeuralgia
What if the diagnosis that changed your life didn't have to define the rest of it? At 27, Amy Behimer was diagnosed with multiple sclerosis. It wasn't her first autoimmune diagnosis either. She had already been living with vitiligo and Graves' disease, and suddenly she was facing a future she never expected. Her first thought? "My life will always be worse now." But Amy didn't stop there.In this honest conversation we talk about what it means to grieve the person you thought you were going to be, live with an invisible illness, and find a new way forward without pretending everything is fine. Amy shares how she learned to control the controllables, focusing on what she can influence while accepting what she cannot. We talk about: Being diagnosed with MS at 27, on top of two other autoimmune conditionsThe grief that comes with a life-changing diagnosis Living with invisible illness and looking fine while struggling inside Redefining what health actually means Everyday habits that support wellbeing, food, movement, rest and mindsetWhy your health habits don't need to be perfect Creating a daily "date with yourself"One of my favourite moments is when Amy says, "Different is good." Sometimes the life we didn't plan for teaches us to live more intentionally. If you're living with chronic illness, autoimmune disease, or simply trying to make healthier changes, I think there is something here for you. 💬 What is one thing in your life you need to stop fighting and start accepting, and what is one thing you can control? Tell me in the comments. 📖 Connect with Amy 🎙️ Autoimmune Health Secrets Podcast 📱 Instagram: Amy Behimer Coaching 🌐 amybehimercoaching.com 🎧 Listen on Spotify, Apple Podcasts, and wherever you get your podcasts #MultipleSclerosis #AutoimmuneDisease #InvisibleIllness #ChronicIllness #TheMicheleRoysShow #MSWarrior #InvisibleIllnessAwareness
My audiobook launches tomorrow. And this week, I got overwhelmed. Not with the recording. Not with the editing. But with everything else it takes to bring an event like this together. Invites, registrations, the host, the guests, a hundred small moving pieces all at once. I had to sit down with my journal and ask myself honestly, Shelly, what's going on with you? And it brought me back to something I have learned again and again on this journey. The power of small things. When I set out to write my book, the whole idea felt too big to hold. So I broke it down to 250 words a day. Those small words compounded into 117,000 words, later trimmed through editing. The same thing happened this week with the launch. I could not send a thousand invites at once, but I could send ten. I could not do everything, but I could do one small thing that moved the needle forward. In this episode I talk honestly about getting overwhelmed, what helped me come back from it, and why small, doable steps matter more than we give them credit for, whether you are healing from chronic pain, working toward a goal, or just trying to get through a hard week. My audiobook launches tomorrow. If you have not registered yet, its free, the link isbelow: https://www.eventbrite.com/e/but-you-look-just-fine-audiobook-launch-celebration-with-andrea-hayes-tickets-1998429646870?aff=oddtdtcreator 💬 What is one small thing you are going to do for yourself this week? Tell me in the comments. 📖 But You Look Just Fine: micheleroys.com 🎧 Listen on Spotify, Apple Podcasts, and wherever you get your podcasts #PainAwarenessMonth #ChronicPain #InvisibleIllness #TheMicheleRoysShow #SmallSteps #Kaizen #ChronicIllnessCommunity