My IIH Journey
Living with a Rare Brain Disease, Chronic Pain, and Finding My Own Way
Hey, I’m Michele. If you’re here, chances are you know the struggle of living with an invisible illness. Maybe you’ve been diagnosed with Idiopathic Intracranial Hypertension (IIH), or you’re dealing with something else that’s hard for others to see but not so easy to ignore in your day-to-day life. Either way, I get it. And I’m here to share my journey, because for so long, I felt like I was living in a world where no one truly understood what was going on inside my body.
I’ve been living with IIH, Ehlers-Danlos Syndrome (EDS), and endometriosis for decades. It's a constant juggling act of managing pain, pressure, and the unpredictable ups and downs of these conditions. What many don’t understand is that IIH isn’t just a diagnosis—it’s a lifestyle. It’s the feeling of pressure building up in my head like a balloon that might pop at any moment. It's dealing with blurry vision, feeling fatigued, and being told you don’t “look sick” when in reality, you're battling pain no one can see. It's living with the knowledge that you have to keep fighting for answers, for relief, and for quality of life.
Living with IIH: A Struggle No One Can See
I didn’t always know what was wrong with me. It took me decades to get a proper diagnosis. In that time, I had doctors telling me it was just allergies, or maybe stress. No one took my symptoms seriously until a doctor finally noticed something on an MRI. That’s when the diagnosis of IIH came crashing in. And let me tell you—it was both a relief and a blow to find out that I wasn’t imagining things, but at the same time, it was terrifying to face the reality of living with a rare and unpredictable disease.
Along the way, I also found out that EDS was playing its part—my joints are hypermobile and unstable, which just adds another layer of difficulty to every move I make. And endometriosis? There isn't a single day it doesn't bring me pain.
The Day-to-Day with IIH: Struggles, Small Wins, and Finding Solutions
Living with IIH has taught me more than I ever expected about self-advocacy. If you’ve got IIH, you know that you don’t get “better.” It’s about learning how to manage your symptoms, finding what works (and what doesn’t), and getting creative with your approach.
For me, it’s been about finding tools that help—whether it’s light sensitivity glasses to make playing pickleball bearable, or a meditation chair that supports my body without making things worse. There are days when the pressure in my head is unbearable, when I can’t focus, or when the pain becomes too much. But I’ve learned to make space for myself, to listen to my body, and to find moments of relief wherever I can.
One thing I’ve learned is that the little wins matter. Like the time I tried yellow-lens glasses for my light sensitivity. I was able to look up at the bright lights while playing pickleball and not be blinded. I could see again without the overwhelming dots in my vision. That was a small moment, but for me, it was huge. It felt like I got a part of my life back—like IIH didn’t define me in that moment.
The Chronic Illness Community That Keeps Me Going
If there’s one thing that keeps me grounded, it’s the amazing community of people who understand. I created this space because I don’t want anyone to feel alone in their struggles. We’re all fighting different battles, but there’s something incredibly powerful about sharing our experiences, sharing what works, and supporting each other through the ups and downs.
I’ve learned that I don’t have to do this alone, and neither do you. Whether you're dealing with IIH, EDS, or any other chronic condition, there’s always room for connection, for sharing what’s working, and for just being there for each other when the world feels a little too much.
I’m here to say hey, I get it. Life with IIH is tough, and it can feel isolating. But if there’s anything I can do to help make your journey a little easier, a little more manageable, then I’ll be here doing just that. Whether it’s recommending products that actually work, sharing personal stories, or simply listening, I want you to know you’re not in this alone.
Thank you for being here, for taking the time to learn a little bit about my journey. I hope this space helps you feel less alone, more understood, and more empowered to advocate for yourself. Let’s build a community where we can all be real, share our wins, and lift each other up.
You can find me on TikTok, where I post about my journey, tips for managing IIH, and products that have made a real difference in my life. I’m so glad you’re here. Let’s keep this conversation going.
