You Have To Spell It Out To Them

, , , , , | Healthy | December 29, 2019

(I have recently been diagnosed with epilepsy at age fifteen and am at my fourth or fifth neurology appointment. For some background, some types of epilepsy can be categorized as “reflex,” meaning there is usually a trigger — most people are familiar with flashing lights — but there are a huge variety of triggers, ranging from drinking alcohol to hearing a specific kind of music. I am describing to my neurologist some symptoms I’ve been experiencing.)

Me: “Sometimes while I’m reading, I’ll have spells where the words are very difficult or I can’t read them at all.”

Neurologist: *mostly disinterested* “Oh… Well, have you been diagnosed with learning issues?”

(I’ve told him all of this before.)

Me: “No. I’ve been reading since I was four and it’s actually one of my favorite things to do. I’ve never shown any signs of dyslexia or anything like it.”

Neurologist: “Do you notice any patterns to when this occurs?”

Me: “I’ve noticed it happening a lot when I’m reading in Spanish.”

(I’m in AP Spanish and have been studying the language for around six years; I’m definitely not fluent yet but am reasonably proficient. I have also told him this before.) 

Neurologist: *long silence* “You’re probably just bad at Spanish. Go ahead and schedule another appointment for a month out.” *leaves*

(I ended up not telling my parents about this part of the appointment for around six months because I was embarrassed and believed my neurologist that I was probably exaggerating. However, during this time, the symptoms worsened, so I told my parents who found another neurologist — incidentally, around thirty years younger. He immediately diagnosed me with reading epilepsy, which is fairly uncommon but absolutely not unheard of and has nothing to do with any prior learning disabilities. For me, it is triggered by unfamiliar words, which, obviously, come up more often in a second language. I’ve now, thankfully, been able to receive much better care.)

This story is part of our Epilepsy roundup.

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