When I was diagnosed with epilepsy at the age of 21 it had been a long time coming. Since I was 17, I had been enduring frequent and terrifying hallucinations, dizzy spells, panic attacks, and visual disruptions. I in no way kept these horrific interludes in my otherwise comfortable life to myself. I constantly expressed the level of fear and discomfort I was experiencing to those around me. Just like any woman with a chronic condition, I was met with disbelief, gentle scorn, and a lot of pressure to stop bellyaching and face my new “adult” responsibilities. College applications, jobs, volunteer work, finals, extra-curricular activities; these were what I was meant to focus on. Not the fact that without warning, the visual field around me would slowly melt away into a churning, skipping mass of colors, lights, and startlingly personified objects rushing toward me.
So I did.
I ignored symptoms for four years that a physician later described as “like living in a horror movie.” I went to classes, I went to work, and I exerted herculean efforts to try and think my way out of a physical disorder so that I could be the way everyone seemed to think I already was: un-sick.
Here is my first lesson: Never go against your inner logic.
Every few months I would repeatedly reach the same level of heartbreaking, nauseating depression. Inability to leave my bed, certainty that my death was lurking around every corner, and the consistent inability to fully experience or express the depth of my emotions and fears. I was numbing myself, living the same grief cycle over and over again. This led without fail to a slew of accusations: I was lazy, ungrateful, unmotivated, entitled, and irresponsible. I couldn’t blame anyone for this impression, because for all I knew, it was true.
I had family members sacrificing to keep me in school, they wanted me to have an education so that I could work toward successful independence. To them I was just another lost college girl, taking advantage of a free ride and enjoying the blissful ignorance of financial gifts. As a young person in crisis, with no tools or energy to provide myself with emotional support and safety, I absorbed the opinions that were thrown my way by the people who loved me. I sank deeper into the belief that all misfortunes I encountered were direct results of my shortcomings as a person.
Here is my second lesson: Never underestimate the power of gaslighting.
If I can go into a hospital and repeatedly describe an experience that is very commonly known as a form of seizure, and be satiated by a professional, licensed medical practitioner declaring that I am wrong and I am fine, then believe me, a rape victim can describe a rape, be told they are WRONG, and go on trying to survive with that pain believing that they are mentally ill or that they simply do not know what sex is.
“Gaslighting” is a term for when someone, often a man, tries to convince someone else, often a woman, that the situation happening around her is not actually happening. While doing research after my diagnosis, I learned that it’s very prevalent for doctors to tell specifically young women, and not young men, that they have been drinking too much, and that is likely the reason for their seizure activity. This was exactly what my doctor told me. I was told that if I took a break from drinking altogether I would likely not seize ever again, and that it was “common” for young women to have just one convulsive seizure in their lives without ever having a repeat. This, of course, was not the case, and also is not true in any way.
Here is my third lesson: Self-love, no matter the timeframe, is not a sin
I am still recovering from many of my seizures. Thankfully I am medicated now and physically healthy, but it does take a toll to trust your own mind again. There is no shame in finding your joy and comfort and doing it in your own time. Find those who allow you but don’t enable you, and always remember that reaching out to them is what they want from you as much as what you want from them. You’ll remember it in the future when you’re up and someone else is down.