Jan 30
What Cracked First, the Chicken or the Egg? Part I
A Medical Mystery or Mental Health Mishap?
I’m sitting here with three manilla folders filled to the max with medical records. A notebook with my cognitive behavioral therapy (CBT) notes. And my memory (which is questionable at best).
Lucky for me I am a writer and a scientist. I have a lot of this documented. Unfortunately, my personal account is lacking, and I do regret not putting this down on paper as it was happening. For the most part I only have the hard data: Dates. Doctors. Appointments. Symptoms. Lab Results. Radiology Scans.
Somehow, lost in the mix was how I was feeling.
In the nearly nine years that have gone by, I have only a handful of entries outlining my internal dialogue related to the situation. Getting through it was my priority. I didn’t have the time or energy to understand the how or the why, but I do now. So I will (try).
It may take a few entries to get through the details, but if you stick with it, I think you might find it interesting.
I’ll try to keep the medical mumbo jumbo easy to follow, but fair warning, being in the medical field myself I often don’t realize that I’m using terms that not everyone is familiar with. That being said, I don’t know everything (It’s true, shocking I know). I could easily be missing something that’s right in front of my face. See something, say something. If you have an idea you’d like to share, I’m open to learning more any chance I get.
Also, if you know someone in the medical field that wants to play mystery diagnosis, please forward them this series! I need as many eyes on it as I can get.
The questions that remain:
Did a lifetime of enduring an undiagnosed anxiety disorder/OCD finally cause me to break thus leading to my symptoms?
Did my symptoms initially come from an underlying disorder/physiological event?
Is there any kind of spiritual/otherworldly link to it all?
Mind. Body. Soul. All?
I may never know.
This will be my attempt to look at it from a step back. Maybe I’ll be able to make some sense of it? Maybe you will see something I missed? Either way, can’t hurt.
Why is this suddenly on the writing agenda?
Two reasons.
Foremost, navigating through my daughter’s newly uncovered mental health issues has me reflecting on my own journey. (More on that →Here and Here.)
Furthermore, at my physical last week, my doctor asked me if I was still experiencing derealization (DR). He was shocked to find that I was. And his inquisitive nature had me moving in the direction of the rabbit hole for another go round.
About five years ago I gave up looking for a reason and decided I was just going to have to live with it. Questions were left unanswered, but I was alive and well. I thought that was good enough. Yet the “why” itch once again is asking for a scratch behind the ears.
[If you aren’t familiar with DR you can check out this article → In focus.]
Doc — “Are you still experiencing episodes of derealization?”
I tilt my head. Episodes?
Me — “I have DR all the time. For the last nine years.”
Doc — “Yes, I know it’s been going on for nine years. But how long does an episode typically last? Fifteen minutes? Half hour?”
I kind of laugh under my breath. No one understands this. I try to explain it, but I have yet to find anyone else who experiences DR like I do.
Me — “My DR lasts all day. From the moment I wake up, until the moment I go to sleep. It is a 9 year long episode. It has never let up. It does go through periods of increased visual disturbances, but there isn’t a day (yet) that it hasn’t been with me.”
He is intrigued. He believes me. It feels so good to not be dismissed.
Mostly because I’ve been his patient for over 12 years. He also knows my entire family, all patients of his. My sister who had worked with him for a few years, oddly has a medical mystery of her own. She suffers from an undiagnosed seizure disorder that developed when she was 12 years old. Might not be related, but he wonders if there is a link.
My grandmother (on my father’s side), is another medical mystery patient. She has been coined a “hypochondriac” for most of her adult life, but the more she tells me of her symptoms, the more I believe her, because they happen to me.
Like my sister and I, nothing shows up on the medical scans, besides the typical wear and tear of a 92 year old woman of course!
(Possible hypothesis: X-linked inheritance pattern?; My father and my brother are not affected, but dad passed his X to sis and me...?)
Is it all in our heads??? Let’s go back to the day it began.
[Link to Part II…]
