My Life with Epilepsy, Psychology, and Psychiatry: Part 1

Life with Epilepsy

My career path began when I was nine years-old, I just didn’t know it at the time.  I don’t recall much about my first seizure. I remember waking up in an ambulance, staying in a hospital for 2-3 days, starting a medication, and moving on, business as usual.  Thus began my life with epilepsy.

Medication was to be taken three times a day, and I was to see a doctor every few months.  I had a very limited understanding of what a seizure was and the implications it may have later in life.  It was as if those around me forgot to include me in the conversation.

I was fortunate that my first medication kept me seizure-free until I was an early teenager.  I regained control after some medication adjustments and managed to do well academically in school.  Socially, I only maintained a small group of friends.  The first time I told another person that I had epilepsy was in 11th grade.

I vividly recall how difficult it was to do so.  There was a great deal of anxiety, with thoughts like: Will this person judge me? Should I trust this person not to tell anyone? Will this person look at they differently?  I was so anxious that I could not even say the word “seizure” or “epilepsy” in person.  Seizure became a dirty word. Instead, I wrote a note, asking them not to read it in front of me.  Despite the person not having a negative response, I did not tell anyone else in high-school.  Through all of those years of my life with epilepsy,  I had never known about support groups or outlets for talking with other people with seizure disorders.

Life with Epilepsy: Transitioning from High School to College

In my junior and senior year of high school, I began driving, having met the requirements to do so set forth by the state of New York.  It was exciting, and gave me a sense of “being normal” that I never really had before.  It gave me some positive vibes as high school wound down.

I ended up doing well enough in high school to be offered several scholarships for college, ultimately deciding to attend Hofstra University in New York.  It was close enough to home in case I ran into any medical issues, but allowed me some independence to dorm.  I immediately declared myself a psychology major, knowing that I was drawn to people’s motivations, development,  and well-being.  Academically, I was prepared.  Socially, I was not.

College brought a lot of challenges that I had not anticipated.  I was sharing a room with another individual who I was not comfortable telling I had epilepsy.  This led me to hiding my medication bottles in my room. I was very discreet when actually taking my pills or just straight lying about what I was taking.  I found myself wearing my medic-alert necklace infrequently, as I was afraid people would ask me about it.  Life with epilepsy continued to be difficult.

Whether due to stress, or just the seizure-gods frowning upon me, I had a seizure in my first year of college.  In New York, driving laws restrict one from driving until they have a one year seizure-free period.  This became another challenge, trying to explain why I wasn’t driving.  My anxiety about what people would think resulted in me telling people that my car had broken down, or my family needed my car.

Several medication changes and adjustments later, and I was relatively stable.

Life with Epilepsy: College in Retrospect

Socialization in college was just a magnified extension of high school.  The biggest hurdle was that the added freedom of college resulted in a lot of people going out and drinking/doing drugs.  It seemed that every time I would turn down a drink (knowing the risks of alcohol), it was followed by a line of questioning.   It became frustrating, and it discouraged me from going out.  Additionally, people stayed out a lot later than usual.  At times, my desire to connect with people would lead me to staying out until 2 or 3am, which in retrospect was a poor decision.

Some people reading this are probably going through or have gone through similar experiences.  Some people reading this may not be able to relate and are thinking: Man, you could have made your life easier if you had handled things differently.  What’s important to point out here is that my ability to cope with my seizure disorder and maintain healthy relationships was limited by my unmanaged anxiety and feelings of isolation.

By age 20, I had yet to either meet or talk to someone who had a seizure disorder.  This was extremely frustrating because it reinforced the feeling of isolation.  I had a sense that I was “the other,” and that no one could understand my experience.  My psychology education had given me a good understanding of mental health, but I was not yet able to take a hard look in the mirror.

Eventually, I finished my college education.  I was awarded a bachelor’s degree in psychology with high honors, which required a year-long research project that was presented and defended in front of a panel of psychologists.

Life with Epilepsy: A Psychologist in the Making

My career as a psychologist started  at a master’s program at New York University (NYU).  I was still not driving at this point, but I was able to take an hour-long train ride into Manhattan for my courses.  I somehow justified not putting any effort into making lasting relationships at NYU, as it was only a two-year program.  After refining my skills and knowledge in psychology, I was ready to enter the work-force.

Ironically, I was very quickly offered a position at the Epilepsy Foundation of Long Island as a behavioral specialist at a group home for adults with epilepsy and seizure disorders.  I was excited and anxious to meet other people with seizure disorders.

What I found surprised me.  The eight or so people living in this group home were very low functioning.  They required assistance in taking care of a lot of their daily life skills.  They were unable to work, in some cases unable to communicate.  Their seizures were completely out of control, and yet they still had the motivation to support each other and their community.  They taught me how severe epilepsy can truly be, as well as that seizures can occur secondary to other conditions. These patient’s had autism, multiple sclerosis, Down’s Syndrome, Williams Syndrome, Prader-Willis, Sturge-Weber Syndrome, Rett’s Disorder, Lesch-Nyhan Syndrome, and the list goes on. But most importantly, they taught me that personal well-being is a worthy pursuit for all.

Life with Epilepsy: An Eye-Opening Experience

I was a naive, young adult in my early 20’s.  It was the first time that I understood how severe this disease could be.

As my responsibilities grew, I began performing psychological testing (IQ, autism screening, living skills).  These experiences gave me a lot of individual 1:1 time with people with epilepsy.  The psychological testing gave objective data about the deficits and side effects people were experiencing, particularly word-finding and memory.

I then began to conduct individual therapy with people with epilepsy.  I felt validated, hearing other people with the same struggles that I had.  It was the first time that I had decided to disclose that I myself had epilepsy to a patient.  My ability to relate to their experiences, I believe, provided an extra sense of care for these patients.  Finally, my boss asked me to run group therapy sessions for children and teens with epilepsy.  It allowed me to reach a large number of people at the same time.  It was difficult but rewarding work.

After my first year at the Epilepsy Foundation, I began to notice a pattern.   A lot of my patient’s showed signs of depression and anxiety, and, worse, their symptoms were not being addressed through medication, therapy, or other social support.  I wondered why, if it was such a common issue.  Why weren’t there more safeguards in place to meet these people’s needs.  After a lot of thought and discussion with my girlfriend (and now wife), I knew that I could do more for my community as a psychologist and a psychiatrist.

Life with Epilepsy: Medical School or Bust

I knew this would be no small undertaking.  The prerequisites to even apply for medical school included roughly 1.5-2 years of coursework and an intensive entry exam called the MCAT.  I began to take the coursework at night and throughout summer and winter breaks.   I started sending out med school applications directly after finishing my second year at the Epilepsy Foundation.

The courses were difficult and life-consuming, but I buckled down and did extremely well.  As I began preparing for my entry exam, I had another seizure requiring medication changes.  For the first time, I began to experience significant, noticeable side effects.  I was having trouble retaining the material I was studying, facts and formulas that had once come easily to me.

It was terrifying.

I began to have doubts.  Would I be able to do well enough on the entry exam to get into a medical school?  Would I even be able to get through medical school?

Be sure to read my next post about my transition into psychiatry and how my life with epilepsy tried to get in the way!

3 Comments

  1. So I’m a psychologist with tonic clonic seizures. Ill have 3 years seizure free and then BAM! I get it. I can feel it coming and scramble to try and get safe and stop it in any way I can think of….sleeping, Ativan, et.c So I’ve been seizure free 15 months and had one today and I’m just devastated right now. I’m heart broken, ashamed, scared, frustrated, worried, and just want to hide. Can’t do that. I own a group practice with 13 clinicians and 3 staff. You are the first mental health professional I have found with epilepsy…I remember being unable to even really say it until my late 30’s. My first one came out of nowhere at 20 years old. This has been a very difficult journey. Thanks for doing this website. I hope it’s active….would lov to open a dialogue with you

  2. Nice read, I just passed this onto a friend who was doing some research on that. And he just bought me lunch since I found it for him smile So let me rephrase that: Thanks for lunch!

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