Experiences - Pt. 2: Invisible Illness

I have been going to the doctor for as long as I can remember. Most people would find this statement mundane, people go to the doctor for physicals and viruses all the time. The difference is my doctors’ appointments are for a mystery ailment that remains mostly unsolved. I have been to countless specialists trying to get a diagnosis or some sort of clarity but ever getting an answer that satisfied me. I have gotten some form of a diagnosis for parts of my symptoms but they said that I just had to live with it. This was not the answer I wanted nor what I needed. I was heartbroken knowing that whatever was wrong with me couldn’t be fixed. Not really anyway. I wrote a personal narrative about one of my experiences dealing with hospitals, doctors, and an invisible illness and I want to share it here. It is a vulnerable piece and sharing it on here seems strange but if someone else has had a similar experience I hope this can help them feel seen, less alone in their experience. It is longer but its an important moment of my life and I hope you’ll take the time to read it and reflect on what it means to be unsure of your future in this specific sense.

Change was not a welcome word in my life. I had no desire to conform to a foreign lifestyle, and my belligerent nature made it obvious. Everyone, doctors and parents and specialists, informed me that I would adjust quickly and become accustomed to a modified lifestyle. I could not grasp the concept of settling for lower than I felt I could accomplish on my own. 

I laid in the hospital bed, my heart pounding in my chest, my eardrums beating to the same rhythm. The cleanliness of the room was comforting at first, but now it was like an iodoform-smelling prison. The electrodes adhered to my head attached to a large machine on wheels beeped intermittently. The gauze keeping the electrodes attached tended to slide off my head, and I had to continually seize it and secure it lower on my cranium. I knew that I looked hideous, and my mother’s incessant documentation confirmed it. I wished she would stop taking pictures of me, it made the reality too real. She continually updated the family group-chat with photos or two-page essays on my health status. I deemed it as a violation, but I would never say so. I looked towards the door; The nurse said she would be in at 12:00 p.m. to remove the electroencephalogram (EEG) equipment and deliver the data to the medical group to analyze, but it was officially 12:01 and I was getting increasingly anxious. 

I fixated on the door. It was much too large, but it was perceivable seeing that the hospital beds needed to go in and out. That would never work with a standard door. I measured up the bed I was in and the doorway, trying to discern how well the bed would fit through the door. It felt strange to have a door with no window like the school doors I was accustomed to. My brain continued to consider the inner workings of the door. I could consciously feel my thoughts gradually begin to leave my brain. I could not move, and I could not speak. I realized what was happening but it didn’t matter because I could not do anything but stare at absolutely nothing and think of absolutely nothing. After a long moment I could sense my muscles loosen and my mind relax. I looked over at the clock; It was 12:05 and I was perplexed as to how it could be four minutes later when it was 12:01. A knock came at the door and the nurse walked in slowly with equipment to remove the monstrosity attached to my head. 

It took hours for the analysis to finish, but when the neurologist and ensemble of medical residents came into the room, I wanted them to leave. I did not want to know the quantity I would have to withstand due to some disorder that I purportedly had. The neurologist smiled at me, but the smile didn’t seem to reach his eyes. He handed me stacks of papers, the rustling of the papers overwhelmed my senses to the point where I could not centralize my vision. After an elongated moment my awareness returned and I read the title of the pages I had received explaining NES (non-epileptic seizures). He began to explain the disorder to me, but he seemed to be mocking me as he did so. He described the brain to me as if I were a 10-year-old who had not quite grasped the concept of my extremities. He continued to hand me papers with headings such as “Stress Management'', “Therapy: How it can Help You”, and “NES and How to Handle it”. I felt nauseated and bitter, his words resonating in my hollow chest.

I resented the news he had presented to me. Not because I had been diagnosed with a seizure disorder, but because I could not fix it on my own. I could not take medication to make this go away, I had to go through an entire process to fix the problem. All my life I had excelled on my own; I was on an advanced undeviated track to college. Nothing had stopped me thus far and NES was not going to be the object of my destruction. 

I resisted all solutions bestowed upon me by holier-than-thou specialists because they had one invariable conclusion: I needed to learn to accept my new reality. My brain responded with an indignant middle finger in the air. I continued on this route because it seemed rational. The human race has a habit of being relentlessly obdurate and I was no exception.

The entirety of human existence is based on two things: reward-seeking and pain-avoiding. In my situation, I was the latter. My way of life was strenuous, and I was drained. But changing to something completely different, even if it would make my life better, was something I was unwilling to do. I was panic-stricken. I was so hellbent on avoiding affliction that I began to hurt myself subconsciously. I began to become socially distant, my grades began to lower drastically, and my overall well-being could hardly be considered as ̈well¨. I was in a state of constant panic, and I would routinely cease to function at certain points in time. 

At a later date, I came to the conclusion that I needed to accept help or I would kill myself unintentionally. I hesitantly agreed to the terms set by professionals who I later noticed were trying to help me rather than receive a paycheck. This somewhat put my mind at ease, knowing that someone had my well-being in mind. I acclimated slowly to the idea of having aide in almost every aspect of my life that would involve my current and future success. I had teachers and family members who willingly took their time to help me become the best I could be under the extenuating circumstances. 

Change is not something people can do naturally, and it is almost never done willingly. Change is not something people enjoy immediately either; change is terrifying. The human brain does not care to acknowledge defects, but the moment it chooses to accept design flaws is the moment it chooses to stay alive.

If you have ever felt or experienced something like this then you should reach out and tell me your story. I would love to know that there are people out there like myself who have had to adapt to a new way of life or times where they have felt alone in their struggle. If you ever need someone to talk to or vent to then I am here to listen. Just message me:) You are seen, you are heard, and you are loved.

Sincerely,

TH