It always starts the same way…
I run into someone uptown or go MIA on social media channels for too long, maybe they were talking to a family member – they want to know how I’ve been. It doesn’t matter if they bring it up or I do, inevitably I get asked THE QUESTION.
It’s such a simple question – a genuine question – the RIGHT question to ask given the situation:
“So, what do you have?”
Inwardly I sigh before I go through the catalogue of short responses I’ve memorized that would make sense to that person:
“Something similar to a stroke… there’s evidence of a possible infection… sometimes I struggle to speak or walk.”
But even I’M sick of my prepared responses.
I get it.
I get the vacant look in your eyes when you ask what’s wrong with me and I try to put into words something that even top neurologists and specialists don’t understand. People “get” cancer, people “get” MS… people don’t get unexplained neurological symptoms.
“But have you thought of ______ ?”
The answer is yes.
I’ve been to my GP enough times that I could probably paint you passing copies of the artwork on the walls. I’ve been in three hospitals – both as an emergency patient and as an outpatient for procedures. Seen 3 neurologists, two specialist. Had two CT’s (one with contrast), two MRI’s, an EEG, a lumbar puncture, and had my blood drawn so many times I looked like an intravenous drug user.
(Side note: I HATE needles)
I’ve been tested for Lyme, Lupus, MS, every type of plausible meningitis, encephalitis, neuro-syphilis…
Something is definitely wrong, and things flag, but none of the results correspond to other results to make a diagnosis.
I feel like I’m trapped in a 13 month episode of House MD, where everyone – including me – expects the medical mystery solved in 43 minutes or less. But in real life there is no Dr. House and no magical TV timeline, only more questions.
“But you look so….”
Normal? I have to.
I’ve tried playing this every other way. I’ve tried giving into it…. this nameless, faceless illness; “being sick”. At first you treat it like you would a cold. You stay in bed. You sleep as much as possible, try to avoid anything that triggers your symptoms, keep a medical diary. But as the weeks and months (and years) go on, its not enough to just “be sick”. And without a diagnosis or treatment protocol, you start to get restless, scared.
And that’s when the emotional roller coaster begins:
Moments of optimism where you feel like you could move mountains (who plans a trip across Canada from a bed they haven’t been out of in 4 months??) Moments of depression, fear. Moments of perspective where you feel so incredibly thankful that you aren’t going through cancer treatment like the 7 year old getting the MRI before you. To moments of extreme self pity – why is this happening to me?
I’ve been through them all and they make you feel really alone.
As someone who is undiagnosed, you don’t really have a home within the medical community and your life outside of it is forever changed.
The only way I’ve found to cope is to compartmentalize my two worlds and try to be normal SOME hours of the day so I don’t get lost in my illness.
I have my “sick” moments at home, behind closed doors. And when I emerge, looking “normal” its because I’ve spent 14-16 hours in bed (I’m better when I’m horizontal), had Dustin coax me out of it, probably told him at least 10 times “I don’t feel good”, showered sitting cross legged because its easier and I don’t fall, drank about a gallon of something caffeinated.
And then for 5-7 hours a day I get to be normal and work, because I can’t lose that or I lose me.
But sometimes even I get them confused.
Sometimes my carefully-fitted positive image fails me at work, or I go full PR in the half hour neuro appointment I’ve been waiting months for and catch myself downplaying how sick I feel.
“The constant head pressure isn’t THAT bad….”
And that’s when I get really scared.
Because I’ve blurred the lines too much, and I’m not even sure what normal feels like anymore. Or what I’m striving to get back to. I start to feel like a confused hype man, my own one-woman marketing team in competing campaigns:
Push forward, live life, be positive, overcome.
Stop, be sick, fight, advocate.
Two sides of a spinning coin, whirling ‘round and around and around.
Family doesn’t care which side of the coin drops on any given day – strangers don’t know any better – but friends and doctors, they’re the hardest part in all of this.
Friends have questions. Friends want to understand and be involved and fight in the trenches with you. But when you don’t really even know what you’re fighting (somedays its an internal battle within yourself to just keep fighting) its hard to keep everyone in the loop.
And then there’s doctors.
Doctors fall into two categories: this is way above my head, you need a neurologist and I AM a neurologist, and I’m instantly skeptical of everything you’re saying because I can’t explain it.
Which is only compounded by the fact that you can’t CHOOSE how you’re going to be feeling on any given day when you see one….
Either its in the ER where your symptoms are at their worst, and half the battle while you’re stuttering, dizzy, and confused is trying to convince them you’re not normally stuttering, dizzy an confused. Or at an appointment booked 6 months ago, where you’re having a “good day” and advocating like HELL for yourself, and they pass you off to another specialist “more suited to your case” that’s booking for 2018.
Which is where I am today. Fresh off my latest neuro appointment, with two new referrals, a pending MRI and an EEG. Tomorrow I get to go back to work, to the other side of my life where I play happy, positive and well.
Today, I’m just undiagnosed.