Holly Spencer

My name is Holly, and I am a chronic illness warrior.

Growing up I was pretty active. I was on the swim team for years and loved participating in school plays and dancing and singing in musicals. After high school, I became a certified nursing assistant and worked with oncology patients, some days on my feet for over 16 hours.

But all that changed September of 2021 when I started falling. I had no idea what was happening to me. The first doctor I saw told me it was anxiety, and I left in tears thinking I was going crazy.

Oh, the many many ER visits and doctors’ appointments of not knowing what was wrong.

When you hear hoofbeats, doctors are taught to think of horses not zebras, which is great for the many many horses out there!! But, if you’re a hidden medical zebra, it can take weeks, months, or years to get a diagnosis. So many doctor’s appointments I had left crying because I had no idea what on earth was happening to my body.

Over time I have gathered more diagnosis’ and learned more about the cause of my symptoms. I finally was diagnosed with Postural Orthostatic Tachycardia Syndrome, or “POTS,” Hypermobile Ehlers Danlos Syndrome, or hEDS, Psychogenic Seizures, and FAI Hip impingement in both hips after many years of struggling.

It has been a true struggle even after diagnosis. A lot of it is seeing doctors, waiting, waiting, and more waiting. I am never not in some level of pain from my hEDS and FAI, feeling any range of symptoms from POTS, and honestly just wondering how I got out of bed in the morning. It’s a true struggle, but one that can’t be fought alone. Chronic illness takes so much, having a support system has made a huge difference in my journey. I’m still learning new things about my illnesses and how to navigate the world (be that cane, wheelchair, or the last strain of my sanity), but it helps knowing there are others who know what I’m going through.

Knowing (at least a few things) and finding people who also are medical zebras has helped me feel less alone in my endeavor to just keep swimming, even if that’s just resting and breathing for today.

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