Your Typical Harvard College Student: Living with an Invisible Disability
By Renneanna Dillen
It all started with an evening run in late June. The sun was still out, and after a long 9-hour shift at my summer job at a local water park, I began my summer training for my senior cross-country season. I began my trail in the backroads, the overarching tree branches offering protection from the intense sun. Although I had a long day at work, I felt good, keeping my stride, running up hills and running past summer homes that lie by the bay.
I never finished this run. I woke up in the hospital, disoriented. I had no idea where I was or what had happened. What was I doing there? I was still in my running clothes-- a fluorescent pink athletic tank top and gray shorts. There were bleeding big cuts and bruises on my knees, and my brain felt foggy. My face was swollen, and I felt nauseous. Two policemen had found me having a seizure in the middle of the road. To put it rather bluntly, I could have died. Instead, I ended up with a concussion.
After a cardiogram, a stress test, an MRI, and an EEG, I was diagnosed with generalized epilepsy on August 15, 2018. An electroencephalogram (EEG) is a test that measures the brainwaves and the electrical activity in the brain (John Hopkins Medicine, 2020). I had a sleep deprived EEG, in which I had to stay awake all night while they recorded my brainwaves from electrodes placed all over my scalp. The electrodes detected abnormalities in my brain waves which were characterized by “rapid spiking waves” (John Hopkins Medicine, 2020), which lead to my epilepsy diagnosis. To be perfectly honest, I did not have a good idea of what that was—it just sounded really scary. And potentially lifechanging.
It turns out that I was not alone. Epilepsy is a chronic neurological disorder in which people have random and unprovoked seizures. Seizures are caused by abnormal electrical activity in the brain. In most cases, the development of this disorder is unknown although a small number of cases are hereditary (Epilepsy Foundation, 2013). Epilepsy is the fourth most common neurological disorder in the United States (Shafer, 2013). It affects about 3.4 million people nationwide as well 65 million worldwide and yet it lacks proper funding for research purposes (Shafer, 2013). Approximately 150,000 Americans are diagnosed every year (Shafer, 2013). Is there a cure for epilepsy? No. You can take medication regularly and still have a breakthrough seizure.
I was a completely healthy 17-year-old, and I had to navigate this new world of being an epileptic my senior year of high school. I had to make some heartbreaking sacrifices: I couldn’t drive (still can’t) and I had to quit track. Five years of training down the drain.
I quickly learned that I had two seizure triggers: sleep deprivation and stress. Seizure triggers are the external or internal factors that bring on seizures and increase the likelihood of having a seizure, despite taking medication regularly. For some people they might be dehydration, alcohol and drug abuse, menstruation, photosensitivity or even having a cold (Shafer, 2013)! Sometimes it takes a perfect storm of these triggers to bring a seizure on. When I have a seizure, I often wake up not knowing where I am and have no recollection on what happened leading up to it. As a student, my seizure triggers are essentially unavoidable. How am I supposed to be successful in college if I could not stay up late into the night to study? How am I supposed to manage my stress with an intense workload?
I am still trying to figure this out as a sophomore—I had only been diagnosed for about a year when I began my first year at college. During my senior year of high school, I had 3 seizures: one was because I did not take my medication on time, another was stress induced, and one was completely unprovoked. I’ve had one year to figure out what this disorder meant, one year to figure out what triggered them, one year to figure out how to be safe, and one year to figure out what my limits were.
An invisible disability is a disability in which you cannot detect by looking at someone. The Invisible Disabilities Association considers “debilitating pain, fatigue, dizziness, cognitive dysfunctions, brain injuries, learning differences and mental health disorders, as well as hearing and vision impairments” to be some common examples of invisible disabilities (IDA). The concept of the invisible disability is something that many people do not understand—especially in an environment like Harvard where people work to the max and do not make mental health and wellbeing a priority. The hardest thing for me was to completely ignore this lifestyle and do what was right for me. For the fall semester I did not join any clubs or comp any organizations. For real. And when I mentioned this to others, they would have a judgmental expression and as a result, I always felt like I had to justify why. Like I needed their approval. I’m not lazy, I swear! It’s when I get overwhelmed, I get seizures and I forget where I am and I get a concussion and I cannot work for a couple of days and I’ll fall behind then I have to increase my meds, and deal with the worsening side effects and it goes on and on. So... like, yeah? I kinda have to take things slow. In addition, I made it a priority to make a balanced schedule and plan all of my classes in the morning and early afternoon so I could study and go to bed at a reasonable hour. I started wearing a special watch, an Embrace2 from Empatica, that detects seizures calls my parents and sends them my location to give them a peace of mind. A strong sense of self-discipline is the key factor in making this work. This created a cycle: the more efficient I was the less stressed I would get and if I get enough sleep, I will be more efficient.
Every time I had a seizure, my neurologist would increase my Keppra (levetiracetam) dosage, which is a strong antiepileptic drug. I’d argue that the side effects of a seizure medication are sometimes worse than the seizure itself. Keppra had very powerful side effects—every time my dosage was increased, I would get so dizzy and weak that I barely stand up straight and could not even concentrate to walk. At one point, the dosage got so high to the point that it made me extremely irritable and unpleasant. I was constantly exhausted. By the end of the semester, my mental health had completely deteriorated, and I had to begin a 3-month transitional process of switching medications to Lamictal (lamotrigine), another antiepileptic. Not only did this help with my mood, but I had to take less of a dosage. Many epileptics have to go through different medications before they can find one that works for them.
I know this all seems highly dramatized and this is where I feel like people may find these as excuses. Unfortunately, I found this to be the case at the Accessible Education Office in which I was told that my requested accommodations (approved by my neurologist) were deemed unnecessary and that I had to fight for what I needed. Ultimately, the AEO reinforced this reality that the only disabilities they saw viable were physical disabilities. But this is what happens behind the scenes for someone with a given disability.
I do not only take these precautions for myself. My episodes put a huge emotional strain on my family which gives me greater incentive to take care of myself. And you know what? I am beyond grateful for being forced to develop these healthy habits as it helps me prioritize my mental health and wellbeing. I’ve even developed an intellectual curiosity about the brain and its irregularities.
Sharing my story was meant to enlighten our community about the presence of “the invisible disability” in society and what life can look like behind the scenes for someone dealing with one. My story is not unique. There are millions of people like me who do their best to not just manage everyday life—but to deal with all the extra weight that is not seen from the outside.
About the Author
Renneanna Dillen is a sophomore at Harvard College concentrating in Neuroscience with a secondary in Global Health and Health Policy.
Electroencephalogram (EEG). (n.d.). Retrieved October 25, 2020, from https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/electroencephalogram-eeg
How do you define invisible disability?: Invisible disability definition. (2019, October 08). Retrieved October 25, 2020, from https://invisibledisabilities.org/what-is-an-invisible-disability/
Shafer, P. O., RN, MN, & Date: 07/2013, A. (n.d.). Other Illnesses. Retrieved October 25, 2020, from https://www.epilepsy.com/learn/triggers-seizures/other-illnesses
Shafer, P. O., RN, MN, & Date: 12/2013, A. (n.d.). About Epilepsy: The Basics. Retrieved October 25, 2020, from https://www.epilepsy.com/learn/about-epilepsy-basics