Description
In this first episode of Chronically Misunderstood, Laura shares why she created this podcast and what it means to live in a body that doesn’t play by the rules. From the invisible effort behind everyday tasks to the stress of fighting to be heard in the doctor’s office, she explores how being misunderstood can hurt just as much as the illness itself. You’ll also walk away with a simple, practical step to start listening to your body with more compassion and less judgment.
Transcript
Welcome to Chronically Misunderstood the podcast for anyone who’s ever felt dismissed, doubted, or labeled as too sensitive while trying to navigate life with a chronic illness, neurodivergence, or just a body that doesn’t play by the rules.
I’m your host, Laura Lee, and I’m so glad you’re here. My own experience with chronic illness includes POTS or poster orthostatic tachycardia syndrome, MCAS or mast cell activation syndrome, chronic reactivation of Epstein-Barr virus, long COVID, Ehlers Danlos syndrome, or hypermobility spectrum disorder, Bartonella, Lyme disease, lupus, Sjogren’s, mold toxicity, and more. For many years, these conditions have left me feeling misunderstood, isolated, and questioning myself.
That’s really the heart of this podcast, creating a place, a community, and hope. A space where we can talk about what it’s like to live in a body that doesn’t follow the rules, share practical ideas for moving forward and let go of the guilt or pressure that it’s somehow our fault because it’s not Many of us were born with sensitive bodies and the world of medicine, and honestly, society in general wasn’t designed with us in mind.
One thing I know is this. Being misunderstood can make healing from the actual illness more difficult.
Think about the medical system. How many times have you been told your labs are normal, or probably it’s just stress or have you tried yoga? That kind of dismissal can be so, so discouraging and sometimes just walking into a doctor’s appointment kicks your body into fight or flight. Because you know, you will have to advocate for yourself, maybe even argue just to be heard. That stress alone can wipe you out for days.
And then there’s family and friends. They can’t see your symptoms, so they assume you’re exaggerating or being dramatic, or they suggest one magic cure that worked for their neighbor’s cousin. They wanna help, but instead it leaves you feeling more alone.
The hardest part might actually be when the doubt creeps in from inside yourself. You start wondering if you’re making it up, if you’re imagining things, if maybe everyone else is right. That’s what happens. When the world keeps gaslighting you, you end up gaslighting yourself.
And of course, society doesn’t make it easier. We live in a culture that glorifies productivity. If you can’t keep up, you’re judged. You feel guilty for resting even when rest is the exact medicine your body needs.
Here’s another layer too. Sometimes our own bodies require so much maintenance, being careful about food, medication, supplements, stress, pacing, that other people see it as perfectionism or anxiety, but the truth is our bodies are really sensitive. They are just giving us data, and that data is worth listening to.
And if you have ever shown up to an event, a birthday party, a meeting, even a doctor’s appointment, you know the drill, someone says, wow, you look great. They mean it as a compliment. But what they don’t see is the 12 hours of sleep, the three hour nap, and the four days of recovery it will take just to make it through. All while smiling through the exhaustion and maybe even pain.
They don’t see the background calculations, how much water you drank, whether you ate before you left, which chair you can sit in without pain, or how many spoons you have left for the day. And then when you finally crash afterward, they wonder why you’re so wiped out or they think you’ve disappeared because all they saw was that one shiny moment.
The truth is, chronic illness comes with an invisible price tag. Every outing, every errand, every commitment, it all costs energy and people around us rarely see the full bill. And it’s not just the big events, sometimes it’s the little things that hit the hardest. Making breakfast for your kids, unloading the dishwasher or running one quick errand can cost you a spoon of energy.
Other people don’t even have to think about it. But for us, that one spoon might be the difference between making it through the afternoon or being completely empty by lunchtime. And when your tank runs dry, it’s not just tiredness, it’s brain fog, it’s pain, it’s dizziness. The full body shut down. That’s so hard to explain to anyone who hasn’t lived it.
Illness doesn’t just wear on your body. It also wears on your nervous system, living with constant symptoms. Medical gaslighting and the unpredictability of flare-ups keeps your system on high alert. Your body never fully relaxes because it’s always bracing for the next crash or the next dismissal
And genetics plays a role too. Some of us we’re simply wired with nervous systems that are more reactive with immune systems. That are more vulnerable or detoxification systems that need extra support. That doesn’t mean we’re doomed, but it does often mean we start the race a few steps behind. Getting out of that constant state of stress is so hard.
Even when you really want to calm down, your body doesn’t always cooperate. It doesn’t feel safe, and that’s important to recognize this isn’t just a mindset problem, it’s biology, it’s wiring, it’s lived experience, so what can you expect on chronically misunderstood.
You’re going to hear stories, mine and stories from others walking this road. You’ll hear interviews with people who get it, practitioners, advocates, and everyday people who’ve found ways to adapt and keep going, and. You’ll always walk away with something practical, a tip, a mindset shift, or a tool you can try right away. Because this isn’t about perfection, it’s about moving forward. One spoon at a time.
So speaking of practical, let’s start super simple. Today I want you to write down one thing your body is asking for. More water, more rest space from stress, whatever it is, treat that signal as data, not drama. That little shift, listening with curiosity instead of judgment is the first step to reclaiming trust in yourself.
Once you write it down, pause and ask yourself, what’s one small thing I can do to meet that need today? If your body is asking for rest, maybe it’s a 10 minute nap, or give yourself permission to go to bed earlier if it’s asking for space. Maybe it’s saying no to one of the things on your list. The goal isn’t to fix everything at once. It’s to practice listening without judgment and then respond with one doable step. Over time, these little steps add up and your body starts to trust that you are actually paying attention.
And just so you know a bit more about who you’re listening to, I’m not here because I figured everything out and now I have all the answers. I’m here because I’m in it with you. I’ve spent years navigating complex illness and neurodivergence piecing together support from doctors, from practitioners, from my own research and from trial and error. Along the way, I also trained as a functional nutritional therapy practitioner, and I’ve worked in system improvement and organization.
That means I’m always looking for ways to simplify the overwhelming, to break down big challenges into doable smaller steps. What I bring to this space is honesty, lived experience, practical tools to help you support your body and your life without the pressure of doing it perfectly and the belief that we can share what works and what doesn’t.
So none of us have to feel so alone while we figure it out. Your experience is valid even when it doesn’t make sense to anyone else. In the next episode, I will share more of my personal story, the twists and turns that brought me here. Until then, remember this, you don’t have to figure it out all at once, and you don’t have to do it alone. This is Laura with Chronically Misunderstood where your story makes sense. Bye for now. See you next week.
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