Trying To Live A Normal Life With My Disorder

I have slept through most of my life. To most, this statement sounds like an exaggeration or an attempt to describe how depression has kept someone from experiencing all of the remarkable things that life has to offer. However, to me, that simple statement is a horrid reality. My diagnosis of Idiopathic Hypersomnia can appear to parallel depression, and the side effects from both neurological disorders are commonly juxtaposed. Yet, Idiopathic Hypersomnia is an esoteric lifelong brain impairment that most individuals have never heard of. Unlike depression, there is no medication that I can take to cure a chemical imbalance.

My Hypersomnia is poorly treated with palliative stimulants, and causes my immune system to diminish. Over the years, I have learned how to accept that my condition is an impactful part of my life, yet it does not define me. In eighth grade, I experienced a minor neck injury during cheerleading practice. I found myself lucky that the only inconvenience from my injury was the humility of wearing a neck brace for two months, but little did I know I would later develop a serious sleep disorder. After my neck healed, I found myself relying on an ad nauseam amount of naps to get through the day. I started exuding signs of depression, I would pass on opportunities to attend social events because I was simply too tired. My entire family watched as my sanguine personality dimmed and I began to isolate myself from my loved ones.

My disorder was passed off as depression until I began to miss school due to illness. I would catch every cold, causing me to miss weeks of school at a time. My absences irritated my parents, it was easy for them to conclude that I had no desire to attend school for I couldn’t function with a small cold and had to sleep the day away at home. It wasn’t until the summer of 2016 that my parents finally understood that I had a chronic illness, that’s when I was hospitalized for a week with my fourth case of pneumonia in a year. It only took 3 days in the ICU for my doctor to realize that my body couldn’t fight off illnesses correctly. High school is said to be some of the best years of your life, but I have had to miss out on everything that makes high school such a unique period of time.

My exceptional experience varies from everyone’s banal sense of high school. By missing so much school, I relinquished any relationships that I would have had with my classmates. Surprisingly, it is not my Hypersomnia that has made high school exhausting; it is my distant connection to who I used to be as a person that has made school so tiresome. I often find myself wondering how my life would be different if I didn’t have Hypersomnia. I yearn to go back to living life. Clearly, I am here breathing and alive, but the quality of my life now is a fourth of what it was before I was diagnosed. I would give anything to go back to being the energetic and garrulous girl that I used to be.

Of course my extroverted personality was never ravaged, it was simply masked by constant sleep deprivation. I despised my Hypersomnia for abducting my life and sabotaging all of the opportunities I was given in high school. Now as a senior, I surprise people with my GPA, test scores, and extracurricular activities despite my unconscionable amount of absences. I feel as though I would have accomplished more in high school if I wasn’t being weighed down by my disorder. My Hypersomnia was often misunderstood by my classmates. I have sat smiling and nodding while high school wannabe med students would attempt to fix my chronic condition with suggestions such as “getting to bed earlier”, “drink coffee”, and “take multivitamins”.

Hypersomnia has obstructed the last years I had as a care-free child, but it has also groomed me to be a self-sufficient adult. My disorder has taught me things that most kids don’t learn in high school. Because I had a prodigious amount of absences, I learned to become self-disciplined and often times self-instructing. Early in my life, I was thrown a big obstacle that impedes the way I live. But I have learned to live with my disorder and remain determined no matter what setbacks I face. I reach out for a small thread that is tied to my old life, before my illness. But after years of self-conflict, I have deduced that my Hypersomnia is a salient part of who I am.

My disorder has distinguished me from most kids my age, and I have learned to embrace that I will always be tired. But that is life, there will never be a day that goes exactly your way, there will never be a day that you are fully rested. No matter how far I reach, I will never be able to go back to life before my chronic illness. Developing Idiopathic Hypersomnia was not erroneous, nor was it arbitrary. I believe that it has shaped the way that I view the world.

18 March 2020
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