My Story of The Big Brush Off

Yesterday, I had over a dozen seizures. After a traumatic six hour ordeal in the ER, I was told by the neurologist (who witnessed an episode), "Well, you're probably just anxious and depressed because of your Lyme diagnosis." (Ahem, I was diagnosed two and a half years ago, lady!!)

She discharged me and I had another seizure in the car. Never in my life have I felt so completely helpless and outraged by the medical community (and as a Lyme patient, that's really saying a lot).

I had a CT scan and a ton of blood work at the hospital and everything came back normal. How I long for the day when instead of sending you home, the doctors will actually say, "Everything came back normal--except for your Lyme disease tests." But that's a blog post for another day...

The neurologist called my episodes non-epileptic seizures. It may be helpful to read this link about what a non-epileptic seizure is. I, however, was sent home with a very unhelpful and downright demeaning paper describing my supposed disorder (also called pseudo seizures) as "one with no medical cause." It goes on to state in the next paragraph that, "this disorder is caused by stress or emotional trauma." Well, which is it? Is there a cause or not??

The neurologist kept asking me in every way she could possibly think of if I was abused, either currently or in the past. She really didn't seem to believe my answer of no. The clincher? My helpful and informative paper about non-epileptic seizures actually says, "Sometimes, non-epileptic seizures may be due to a person faking the symptoms to get something he or she wants." (I really wish I had a link to where ever they printed this off from!)

The good news is, it's already 7:00 P.M. and I haven't had a single seizure today. I must be still too worn out from my Oscar-worthy performance in the ER last night to muster up the strength to put on another show! Someone give me a trophy, because my acting skills last night were killer!

Jokes aside, I had an MRI this morning and am still waiting on the results of that. I am also waiting on an appointment for a 24-hour video monitoring seizure test that will hopefully shed some light on what the heck is actually going on. I also have an upcoming appointment in a few weeks with a more Lyme-friendly neurologist.

If you don't have Lyme disease, you probably have no idea how badly Lyme patients are treated by numerous medical professionals who are prehistorically out-of-date on their Lyme disease knowledge. If you do have Lyme disease, you likely have your own version of The Story of Receiving the Big Brush Off By Doctors. (Feel free to send me a link to your story and I would be happy to publish a link at the bottom of this post.)

We don't tolerate bullying in schools. So why should we tolerate it in our healthcare system? In my head I keep replaying the scene over and over again--this neurologist who refused to even look at me (all questions were addressed to my husband, not me) asking me the same question: Am I being abused or bullied, either now or in the past?

My new answer: Yes, my whole life, doctors just like you have abused me by discrediting me and my pain, time and again. I am a person, a human being, and I am trusting doctors just like you with my most sacred treasure: my health. You may not understand much about Lyme disease and I'm okay with hearing you utter those words--that you simply don't understand what is happening to my body. But you do not, under any circumstances have the right to insinuate that what I'm going through is in my head or that I am making it up.

Because the truth of the matter is, I've already forgiven doctors just like you who were not able to see my diagnosis as Lyme disease, inadvertently causing me to suffer an inhumane amount of pain and suffering for perhaps the rest of my life from what should have been a curable disease, all because I let doctors just like you convince myself that maybe my pain and suffering wasn't legit.