001 Living with Chronic Illness

My Story and Why I Started The Invisible Illness Club

In this first episode, I share my journey to getting diagnosed with Ankylosing Spondylitis and Fibromyalgia after years of being dismissed. I also talk about why I started The Invisible Illness Club Podcast and what you can expect—real, honest conversations about chronic illness, faith, and finding joy in the hard moments. You’re not alone here!

Memorable Quotes:

  • Finally! Someone was taking me seriously and it wasn’t even at my own appointment!
  • We’re in this together, and I can’t wait to walk this journey with you.

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Transcription

Hey friend, welcome to the very first episode of The Invisible Illness Club Podcast! I’m so glad you’re here. If you’ve ever felt alone in your chronic illness journey, I want you to know—this podcast is for you. We’re talking about navigating friendships, managing fatigue, setting boundaries, and all the messy in-between moments that come with this life. No toxic positivity here—just real talk, a little bit of humor, and hopefully, a whole lot of encouragement.

Since this is our very first episode, I figured it’d be a good time to tell you my story and why I started The Invisible Illness Club in the first place.

So, let’s rewind a bit. Several years after I had my son (who, by the way, is now 23—what?!), I started having a lot of lower back pain. And of course, when I went to the doctor about it, I got the classic, “Oh, that’s normal,” followed by, “Have you tried yoga?” You know, because yoga cures everything, right?

Fast forward to when my son was in high school—my back pain was much worse. At the time, I was a teacher in Waco, which meant I was standing for long hours every day. On top of that, I was a single mom, so it was all on me—taking care of my son, the dogs, the house, everything.

I finally saw a doctor who took some X-rays and told me, “Well, it looks like the bones in your pelvis didn’t go back together completely right after you had your son.” It’s called Pelvic Girdle Pain where if your baby’s head presses on your pelvic bones a certain way during childbirth, it may create a gap between two bones at the front of your pelvis. He thought that was what was causing my radiated back pain. I was sent to physical therapy, which helped a little, but definitely didn’t fix things.

Meanwhile, I had also been dealing with migraines and body aches for years, but those were always brushed off as allergy headaches or tension headaches or, you know, just being a woman. (Because apparently, women are just supposed to be in pain all the time?)

Now, let’s jump to 2018. By this point, I had gotten remarried, was three years into teaching, and was dealing with almost debilitating migraines. My back was still bad and I was noticing some issues with my heart rate. I had started working out at a gym—you know, the one where you wear a heart rate monitor to track how hard you’re pushing yourself? Well, mine was always higher than everyone else’s, even when I didn’t feel like I was overdoing it. I also started having moments where I felt super dizzy and needed to sit or lie down.

So, I found another new doctor. (If you’re keeping count, that’s doctor number three.) And finally, this one actually listened. My heart rate issues weren’t too bad at the time, so she chose to put me on Propranolol which can help with heart rate and migraines. She then referred me to a migraine specialist for further treatment.

But the back pain? Still there. Still awful. And at this point, I had been told “nothing was wrong” for so long that I just kind of accepted it.

Then 2020 hit. (And no, not just that part of 2020—though, yes, that was a lot, too.) My health took a serious nosedive. My migraines were still around, my back pain was worse than ever, and I started having even more aches and pains throughout my body. After a lot of conversations (and even more prayers), my husband and I made the hard decision for me to quit teaching.

Shortly after the new year in 2021, we moved to be closer to my parents to help out my mom, who was having her own struggles with chronic illness. One day, I took her to an appointment with her new rheumatologist. And while we were sitting there, the doctor looked at me—not my mom—and asked, “Do you have back pain? How long have you been dealing with it?”

Turns out, she had just diagnosed my mom with ankylosing spondylitis (plus a few other things), and something about me must have set off her spidey senses. She told me to schedule an appointment with her ASAP.

And finally—finally—I got answers. After all the testing, I was diagnosed with ankylosing spondylitis and fibromyalgia. In 2024 we were living with my inlaws for a couple of months helping them out and I began to have heart rate issues again. I would feel dizzy, or short of breath, and not be able to do much. After getting back to Texas, I began seeking help for this. We’re currently in the process of running more tests because I’m showing symptoms of POTS (Postural Orthostatic Tachycardia Syndrome). So, yeah—it’s been a journey.

Through all of this, I’ve felt this deep pull—like God was calling me to create a space where women with chronic illnesses could feel seen and heard. Because I know what it’s like to feel dismissed, to struggle in silence, to wonder if anyone else gets it. And I never want anyone to feel alone in this.

So that’s why I started The Invisible Illness Club Podcast—for you.

Now that you know a little about me, let’s talk about what’s coming up on the podcast!

Each week, we’ll have real, honest conversations about life with chronic illness. Some episodes will be personal—I’ll share my own struggles, wins, and lessons. Others will be more practical, offering tips and mindset shifts to help you navigate daily life. And because faith is such an important part of my journey, I’ll also be talking about what it means to trust God when you’re struggling with your health.

Here’s a little sneak peek of what’s coming:

  • How to Set Boundaries with Chronic Illness (Without the Guilt) – Because protecting your energy is just as important as managing your symptoms.
  • What to Do When You’re Sick on Top of a Chronic Illness – Because let’s be real, getting a cold or flu when you already feel terrible is next-level frustrating.
  • How to Find Joy with Chronic Illness (Even on Hard Days) – Because joy isn’t about being symptom-free; it’s about learning how to find meaning in the midst of it all.

And in a couple of months, I’ll be bringing in guest interviews—so you’ll get to hear from others who truly understand what it’s like to live with chronic illness. My hope is that every episode feels like a conversation with a friend—one that leaves you feeling encouraged, understood, and maybe even a little more hopeful.

So, if this sounds like the kind of support you’ve been looking for, I’d love for you to subscribe so you don’t miss an episode. And if you know someone who could use this kind of encouragement, go ahead and share it with them.

We’re in this together, friend. And I can’t wait to walk this journey with you.

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