TBI Survivor Blog Series 2023 - My Medical Experience: Leaving the Carnival Behind
My Medical Experience: Leaving the Carnival Behind
By: Laurie Thomas
Doctors are supposed to help us. Right? That’s how I saw doctors until they only saw my symptoms. Focused on my blurry vision, migraine, vertigo, fatigue… they saw anything but the whole person I wanted to be.
Trips to the doctor began to feel more like trips to the carnival. Doctors became sideshow magicians, sawing me in half and chopping me into neat little parts: neurology, otolaryngology, gastroenterology, cardiology, psychology. You name the “ology” and I’ve seen a doctor for it. And every one of those doctors played whack-a-mole with my symptoms.
“Aha, you have insomnia. Take this pill.”
Great. A pill for this symptom that made that symptom worse.“Yes, you have tachycardia. Reduce your stress. Eat more salt.”
Wonderful. Big diagnoses with seemingly impossible fixes.“Oh, you have dysphagia? Go for these 7 tests and follow up in 3 months.”
Sure. Tests upon tests to diagnose single problems while ignoring multitudes of others.“Hmmm, you’re still feeling dizzy. This medication should have fixed that. Maybe watch some mindfulness videos online.”
Sigh. Shaken heads and shrugged shoulders when the constellation of issues continued to grow.
The medical system is very good at reacting to save lives, but it wasn’t very good at working with me proactively. It couldn’t help me create a life I enjoyed living. I felt like I was stuck in the tilt-a-whirl. And the carnie-in-charge couldn’t be bothered to stop the ride.
When I was discharged by the neurologist who diagnosed me with dysautonomia because there was nothing else that could be done, I was confused. The medications may not have worked but surely there were other options. I didn’t want a fatalistic fortune teller. I wanted someone to help me – the whole me.
So, that’s who I became. I researched my symptoms and diagnosed conditions in medical journals. I found vestibular therapists, athletic therapists, psychotherapists, and more to access supportive therapies. I pared back my life. I embraced slow and steady. I aligned myself with people who had the time and ability to care. I sought out simple joys.
Instead of trying to fit into a system that wasn’t designed for my complex needs, I’ve learned to use the medical system as needed. Do I need a medication refill or emergency support? Off I go. Am I experiencing a flare of many symptoms? Go slow. Am I overwhelmed and looking for help? I can take care of myself with a bit of support and a dash of hope.
Although I’m not “fixed,” I feel much better than I did on the tilt-a-whirl of medical appointments. And, more importantly, I’m not driven by the need to be “fixed” anymore. My body may throw more curveballs than a pitcher at a bottle toss, but my life has value just as it is. Thankfully, since I’ve stepped away from the medical carnival, I can see that again.
Laurie Thomas’ Bio:
My entire life, I have loved reading and writing, and I’m lucky enough to do what I love as an editor, writer, and mom. Although I have sustained multiple concussions throughout my life (All my clumsy, unlucky friends, raise your hands!), I have not lost my love of learning and communicating. Even when my speech was slurred or the words of others didn’t make sense, I found ways to connect with what brought me joy. I hope my stories can help you smile in recognition and hope.