PNES SEIZURES...I accept it with no shame!

I can recall with vivid certainty the moment that I received the second blow of my life after myasthenia gravis.
It was a night after the family had dinner, after I had spent the day whining about my office, my inabilities, etc..and listening to the never ending sermons from anyone and everyone my eyes could actually see.
Up until that day, only about my husband had seen one of my seizures.

Of course, after many more seizures, the inevitable happened. I pierced my tongue with my god gifted vampire teeth and I bled profusely after a serious seizure which this time involved severe chest jerks too ( like those in exorcism movies i guess•04).
Well let's accept the various anxiety and anti convulsion medications failed to help.
I was at the point where I needed someone to figure out why I was having seizures of all shapes and sizes, before I stood in front of my family as the healthy MG recovering patient, I was desperately trying to be. So, I received a 40 mins EEG, during which time I had only three clonic-tonic seizure.

But that one seizure was enough to result in a diagnosis: I did not have epilepsy. My brain succeeded in duping the EEG  machine by not showing any "spikes" which is what is the deciding factor for the doctors to treat me or let me go in whatever state I might be (declaring it stress induced so all in my head). But how can that be factor to decide the patient dint need help and be left to hurt herself in that unconcious state followed by the complete memory loss?
So it was declared I have Psychogenic Non-epileptic Seizures. Even as the incredibly kind and sensitive neurologist offered me an explanation, I couldn't help but wonder why so many qualifiers were needed within the diagnosis: Pyschogenic Nonepileptic Seizures -  these words seemed more important than the seizure diagnosis.
As my doctors strolled out of my room, arguably on their way to see patients with "REAL" epilepsy, I just sat in my hospital bed trying not to choke on the crazy diagnosis.

So in a layman's language PNES attempts to articulate the IMPOSSIBLE: seizures that just happen, not for any reason one can see on an EEG.
So an easy way out, PNES as a result is now attributed to trauma, with seizures functioning as a way to encounter deeply repressed trauma (ahem ...i dont remember to have repressed anythng.. i cant even repress food which is proved through my froggy burbs).

But yes there is another theory; my pain response is not a match to the severity of the migraines I face. Hence, the seizures are (maybe) a way to try and articulate and even control the migraine pain ( my body seriously needs some lessons on how to handle pain..why the need for such drama!). Of course, there are many, many articles reporting the suicide due to migraine estimating that migraine pain can lead to suicidal thoughts.
So I guess attributing my seizures to migraines would be a much more comfortable way to explain my disorder (medical practitioners are you listening...it's a clue”9ý2)

But that isn't how I learned to overcome the shame attached to PNES. I overcome my shame in the same way I have (well..wudnt lie..m still in the process) overcome shame about my walking, eating, speaking disorders gifted by Myasthenia Gravis-  by talking about it (I call it spreading awareness about it), and more importantly, REFUSING TO APOLOGIZE FOR IT”9Ú4.

To those with any seizure disorder, I can say I know the horror you feel upon returning from a seizure; looking back at those faces of confusion, panic, disgust and sorrow and you are not able to remember what exactly happened jus before all this.
I can say, I feel the same fear to go out alone, to commit to things (like my job), to push myself to be the person I used to be before all this happened. I am afraid of having a seizure in the bathroom or in front of coworkers. I am afraid of being alone, as much as I AM AFRAID OF BEING WITH PEOPLE.

I feel those things because I have a seizure disorder. But the main issue that is poorly explained is the fact that though PNES is  nearly as prevalent as multiple sclerosis it is made much worse when we have to go through it alone, entrenched in shame and humiliation, afraid to talk about our disorder.

But I believe I have the power to change that by refusing to be stereotyped and by reclaiming the life I once believed would always exist. I am a successful, professional, well-adjusted and happy wife Mother, daughter, employee, friend,  and human being. I also have PNES. And I am tired of feeling like I have to apologize for having PNES because it isnt well understood, because it can sometimes be ugly, because it can sometimes be inconvenient and because I can sometimes be scared as hell.

Well, I am going to do just the the opposite - I will tell you about it. I will talk about it because i feel more people need to, and by doing so, we can all feel a little bit less shame, and a lot more in power and in control. Is it not?