Because I have had epilepsy for 15 years, I know that having intractable epilepsy, or really any type of epilepsy is debilitating. It is a loss of control of the one thing you were promised to have control over: your body. You have a seizure, you take medicine, you have another seizure, and you go up on your medicine, and all the while adjusting to these different medications and therapies, you are adjusting to breasts, testes, periods, and pubic hair. Having seizures while going through puberty can seem, and often is, a complete loss of control. This loss of control of the body crossed with identity formation and exploration during adolescence can feel like the struggle of epilepsy in fact becomes the person.
In my own lived experience, I was diagnosed with absence epilepsy at the age of 6 at Johns Hopkins Medical Center when I was living in Baltimore, MD, where I spent the majority of my childhood. Although I do not remember the initial diagnosis all too well, I remember constant EEGs and trips to the hospital, but mostly, a real difficulty in math that I was told was connected to my epilepsy diagnosis. In second grade I was reading at a fifth grade level, but struggling to the point of intolerable frustration with everything math related, putting hours into what seemed like impossible math homework. I was able to read Harry Potter alone, but I had a learning disability in math which destroyed me.
My family moved to Northern California in 2009, just in time for me to enter fifth grade. Throughout elementary school, my seizures remained uncontrolled. I transitioned from medication to medication, never realizing this childhood or reality was unconventional or strange. Or as some people would say and indicate throughout my life, deserving of sympathy. Words like “EEG”, “neuropsychology” and “titration schedule” were in my vocabulary when I was growing up, but it only really registered that this was something that other people did not experience until much later. I remember at one point having a playdate with a new friend, and showing her all the pills I had to take everyday. Mostly pointing out how I was an expert at swallowing pills-very important knowledge for an 8 year old. She abruptly said that if she had to take that much medication, she would just dump it all behind the couch everyday. I was shocked, didn’t she realize that this is what I have to do to survive? That this is what made me not have seizures? To me, taking medication, going to the neurologist, and EEGs, was just life, just like snow days, and going to school.
The transition from childhood to adulthood as an epilepsy patient felt exacerbated and more painful due to my chronic illness. However, because I had never known any other reality than that of seizures, my perspective on my epilepsy and the effect it had on my mood was embryonic. Although this section of my life is much more complicated and deserving of more space, I suffered from depression in high school, and looking back, was probably connected to my epilepsy.
Throughout my identity formation, and identity exploration, I desperately tried to not let the struggles of epilepsy and loneliness take over who I was, but I let it shape me. I let these struggles ultimately give me power.
I believe there is a difference between letting a struggle define you and letting it shape you. One is never simply the result of one identity or struggle, instead they are the result of a combination of experiences. This is the key to healthy identity formation and exploration throughout puberty. Adolescents with epilepsy are trying to find themselves with multiple labels already put upon them through the act of a diagnosis- most of the time since early childhood. Diagnosis and labels inevitably isolate them from their peers, which can lead to feeling like epilepsy is their defining feature. This often leads to shame and discomfort, and a feeling like the person with epilepsy has to “come out” about their epilepsy. Something that needs to be emphasized more when treating adolescents with epilepsy is the fact that they are not their epilepsy- and that they have control of their body and life even when they do not feel like it.
I always heard growing up that the transition to adulthood would be not just hard, but scary. Epilepsy causes more complications. We just don’t know how one’s epilepsy or seizures are going to affect our transition from childhood to adulthood. For most people with epilepsy it can be hard to talk about this with our carers. When you are entering puberty, all you want to do is blend in with your peers. Talking to your friends about these issues can feel like social suicide, when you’re defined by social circles and the clothes you wear, erasing the epilepsy diagnosis with a healthy dose of denial often seems like a far fairer solution. However, I am a believer that the more you know about your condition, body, and brain, the more power you have. This is why neurology research, and specifically epilepsy research, has always fascinated me.
The Journal of Epilepsy and Behavior did a longitudinal study back in 2016 looking at the transition from “pediatric to adult care for youth with epilepsy: Basic biological, sociological and psychological issues” and found that all adolescents will show an increase in the neurotransmitter dopamine receptors, especially in the nucleus accumbens and limbic system. These seem to mature and develop earlier than the prefrontal cortex. In layman’s terms: the decision maker of the brain. The results of this study showed that “when a poor decision is made in an emotional context, the adolescent knows better, but the emotional context biases his/her behavior in the opposite direction of the sensible action”-that emotion takes over the logic.
This was one of the most important quotes that stuck out for me while reading this journal article-partially because I think it can be applied to almost all aspects of adolescence development and adolescence struggle. Physicians and clinicians should keep this in mind when deciding on treatments for epilepsy patients, and when thinking about how drugs affect decisions in epilepsy patients.
One thing that the longitudinal study emphasizes and needs to be studied more thoroughly, is the effect of different medications and therapies on the dopamine receptors. Pediatric neurologists are often equipped with a different toolbox than neurologists who treat adults. This is important to acknowledge, especially considering the fact that many pediatric epilepsy patients are born with epilepsy and comorbid disorders, while often adult epilepsy patients develop epilepsy through traumatic brain injuries. There is much work to be done bridging this gap when transitioning pediatric patients to adult care, which starts with communication, education, and ultimately trust in the provider.
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