When I first started feeling the symptoms of my chronic illness, I was in my early twenties. I was told I was "too young" to be experiencing the symptoms I was having. All of the tests were "normal." I even had one doctor put in my medical chart that I was a hypochondriac.
You can imagine that I felt pretty defeated. I was made to feel crazy, and even started second guessing myself. Maybe it was all in my head...
But then there was the fainting.
The first time it happened I was around 21-22 (it's been a minute, so forgive me that I don't remember exactly). I was in the car headed to Kings Dominion with some friends for the day. It's about a 2 hour drive from where I was living at the time, so we got up early, grabbed some coffee and toast, and hit the road.
Along the way we were talking, and singing (theater geek here!), and then very suddenly I didn't feel right. I remember saying to my friends, "Guys, I don't feel so well." The next thing I remember was waking up with my head on my friend's shoulder and they were all really freaked out. I didn't have time to fully process what had happened because I vomited directly into my hands. Yeah. Gross.
We pulled over at a fast food restaurant, I cleaned myself up, and then I was able to really hear what happened. I had full on passed out. One of my friends, who was working with disabled adults at the time, told me it looked like I had a drop siezure.
When we got back, I made an appointment with my regular doctor and that's what started my years long search for answers. She sent me for cardiac and gastrointestenal tests, and it was all normal. Not even a borderline result on anything.
But then I fainted again.
More tests. More normal results. More fainting. By the time I was 27 I was passing out at least twice a month, but usually more. And even when I wasn't fully going out, I would have tunnel vision, dizziness, shaking, sweating, headaches, ringing ears, and all the things that go along with fainting. I was miserable.
But the medical community had no answers for me.
Until one day I landed in the ER. I had already been off work for a few days (as a hairstylist the week before Christmas), and I decided I HAD to go in. My clients needed me. My team needed me. So I woke up, rallied, and started driving. I was on my way when the tunnel vision hit. I immediately pulled over, called my boss, and told her I was going to the hospital.
That hospital visit gave me exactly ZERO answers, as expected. BUT, the follow up visit to that was unlike any other doctor's appointment I'd ever had in the several years prior.
I met with a resident doctor who took a whole hour with me. Asked me a TON of questions no one else ever had. At one point I was just sitting there and he was silently staring at the notes. I could tell he was trying to make sense of it all. Then, he asked me if I'd ever heard of Hypermobile Ehlers-Danlos Syndrome.
I hadn't.
He referred me to a geneticist for confirmation, and a year later I had it. When that doctor took my hands, looked me in the eyes, and told me I wasn't crazy, I lost it. It was the first time I felt heard. Believed. Trusted. And, in a way...normal.
It's been nearly 20 years since then and I've learned a lot - about my body, about chronic illness, and about the medical system's take on it all.
My issue with doctors is that they only know what's within their scope of practice. They don't know everything. They aren't trained in all areas of health as doctors, or as nutritionists, personal trainers, or any kind of wellness practitioner. And it's not on them fulfill all of those roles. Do doctors have their place? Yes, and we should absolutely value the medical community's opinion. But they are just that...OPINIONS. Doctors, after all, are human just like you and me.
So what did I do? I kept learning. I kept growing. I earned multiple certifications in the health & wellness fields. And I found a passion for helping others who are or who have struggled just like me.
It's not all in your head.
You don't have to let your diagnosis define you.
And there is something that can be done to help you.
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