Watching the news this morning - listening to a woman recount her story of being misdiagnosed and judged and labelled - I was hurtled back in time.
It took Rebecca Birnie two years to get a diagnosis for her brain tumour; two years of being mislabeled, misjudged and misdiagnosed. Multiple doctors, as many judgments, it seems.
It took me four years to get a diagnosis for my own neurological nemesis...the grenade in my brain...my AVM.
Four years of being called "anxious", of being accused of drug seeking and of malingering; of being considered parentally challenged (haha...my own word..I was actually sent to counselling, at one point, to help me be a better Mom). Four years, during which far too many doctors prescribed unnecessary drugs and told me that stress was causing my headaches.
Not one, it seems, ever stopped to consider that, perhaps, headaches were causing my stress.
It wasn't until I sat in the MIR (the military equivalent of urgent care facility), and refused to leave until I saw a neurologist, that anything even began to get done. It wasn't until I rebelled against military regulations and visited a civilian emergency in the dead of night - met one good doctor who didn't know me to judge me - that I finally got my answers.
In essence, I diagnosed me. I got it done.
I shouldn't have had to do that all those years ago. Nor should Rebecca Birnie, more recently, have had to demand the scan that finally gave her the answers she so desperately needed.
Seriously, is it because we are women, with softer voices and smaller statures and well...hormones? Are we not past that kind of stereotyping by now? Is it because neither one of us was able to properly communicate or adequately describe the agony and confusion that a broken brain can cause? (Although you'd think the one doctor I vomited on, at the very least, would have gotten that message loud and clear).
Or are we both - and so many others (have you, perhaps, read the book Brain on Fire?) - just victims of what our society has become?
That's my feeling, my opinion on it all.
We live in a stressful world, and so much of what happens to us - both physically and emotionally - is blamed on anxiety.
We live in a world so pressured and insane that too many people inject crap into their veins simply to escape the reality of it. We live in a world of increasing medical needs and decreasing medical resources. We live in a world where so many people are physically sick from mental health issues that those with organic physical ailments - especially neurological issues that can mimic psychological problems - often get lost.
I got lost. And I'm pretty sure Rebecca did, as well.
Somewhere between the "opioid crisis" - which renders any and every complaint of extreme pain suspicious - and the current, overwhelming, anxiety-centric focus within the medical system, we got lost.
I think the saddest thing I heard Rebecca say this morning, as I watched her on the news, was that she was "relieved" when she was finally diagnosed. Imagine, being relieved to learn that you have a killer tumour lodged in your brain.
I can relate.
When I finally got the scan that showed that the whopping big, inoperable AVM in my right fronto/parietal lobe was bleeding, my first emotion was relief. I wanted to run to all those doctors and counselors and wave the scan - those damned pictures, my proof - in their faces.
I felt vindicated, and yes...relieved.
That's just sad...because my first emotion should have been fear. My second emotion should have been grief...for all that I was about to endure and all that I was about to lose.
Having been denied those reactions, however, and years beyond all the grief I finally got around to feeling, I can do nothing now but tell my story and hope that it will change something; that one doctor somewhere/anywhere will read it and request a scan before prescribing an anti-depressant; that one general practitioner will send out a consult for a neurologist before sending out a consult for counselling.
Or maybe, that one person suffering from chronic headaches and/or neurological symptoms will read this, recognize that there is a very fine and dangerous line between psychology and neurology, and advocate for themselves. Perhaps they will refuse to leave an ER department until they see a neurologist, or they will keep going to new facilities until they meet that one good doctor who doesn't know them to judge them.
Perhaps they will get it done themselves, which, although not the ideal scenario, is far better than the life-threatening option of not getting it done at all.