The Student
Voices
“Despite the effect it has on my life, I am not defined by my illness”
by Aoife Leong, 3/10/20

I have still not fully come to terms with the fact that I have a disability. At 17 years of age, I did not think I would find myself at my weakest and most vulnerable state, especially since I was and am still yet to live my life to the fullest. But be that as it may, that was very much the case for me.

My daily morning routine used to simply consist of brushing my teeth, changing my clothing, styling my hair, etc. Just normal things any normal person does in the morning. Nowadays, it is still very much the same for me. Except now my mornings also consist of swallowing a bunch of pills that I cannot survive without and putting a wig on my head in order to hide my insecurities and avoid judgement from others around me.

At first, no one realised what was wrong with me. I didn’t realise what was wrong with me. Nearly one year ago, I had to constantly leave school as I was always feeling unwell. I was always hesitant to do so, especially because I was in my most crucial year of high school and I was determining the path I wished to take in life. I wanted, no, needed to thrive this year as I felt my grades in the previous year were awful and unacceptable for university. The lack of A grades in my examination certificate kept screaming at me “You’re a failure” and I was determined to try and silence that. I was so blinded by visions of a non-existent future for me that I failed to see that it was ultimately my desperation that was going to be the cause of my downfall.

I felt like I had no control over my body. I was always either too hot or too cold. I desperately wanted to crawl out of my own skin as my body was no longer a place of comfort. I constantly felt the need to regurgitate anything I consumed. My ears grew scarred and were constantly leaking lymph fluid. My hair was also growing more and more sparse, like a forest slowly undergoing deforestation, although this was not a significant loss at the time because you never realise what you are missing until it is completely gone. My brain pounded my skull constantly as if it were desperate to escape an internal biological hellfire. Food now made me sick to my stomach. My throat was a prison cell for any fresh air that dared to give me any ounce of life and the trapped air circulated in my throat like a sandy tornado picking up tiny particles and thrashed them against my windpipe. My vision would occasionally blackout as if my eyes were being drained of light so that all there was left to see was an abyss of despair into nothingness. My organs were strait-jacketed in the asylum that is my body. Some of my teachers had also taken note of my sudden visible weight loss. But despite all this agony I was experiencing, the many doctors I visited just maintained their stance that I was only mildly ill and a few tablets should solve the problem.

The first few times I went to appointments, the doctors I had met all displayed compassion to my decaying condition and promised of an admission to the hospital if the medication given to me did not cure me, but there were times when I was met with a monotone “Oh, poor you” from a man whose face was blank of expression, much like his white coat. I was prescribed an abundance of antibiotics, and none of them eased the pain of my intestines writhing like maggots feasting on what felt like my soon-to-be rotting flesh. Life for me had become: go to school. Leave school. Doctor. Medicine. Home. Repeat. It was the definition of insanity.

I began to give into the belief that I was deranged. It made sense at the time. No one could understand what was wrong with me and my mother was growing increasingly more frustrated as it appeared as though I was sabotaging my own health. I thought, maybe I am my own saboteur. My mother was going to refer me to a psychologist before my doctor finally wrote me a letter that called for me to be admitted into hospital, ultimately ending the cycle of lunacy. Now it was time for stage two.

Now that I was in hospital, I would have sleep cut short so that bottles of blood could be taken from me daily. Everyday, I was getting stabbed with needles. I have ridiculously tiny veins that are as thin as threads, so nurses often had to prick at me repeatedly as though I were a subject of dissection in a biology class. There was even one occasion in which a nurse, after having attempted to draw blood from me over ten times, surrendered as my veins proved to be far too devious. Time also seemed to have no meaning, and all the blood being drained from me seemed to be for nothing as I waited and waited for the blood test results, but to no avail. It felt like pointless bloodshed. My doctor was horrified when he found out I had lost a substantial amount of weight in one month. I was far too weak to move and even required assistance to walk to the bathroom as I feared my eyes would lose sight. I had always felt extreme embarrassment from this as I felt it was ironic that an older nurse had to guide me to do the simplest of tasks as if I were an elderly, frail woman who was incapable of supporting herself, when really I am young and supposed to be healthy. The traditional roles of young and elderly were reversed, and knowing that made me feel absolutely hopeless. I was supposed to be a 17 year old, not 71!

There was one instance in which a nurse brought me a commode to urinate in. Having to use a commode threatened my dignity, but what really made me begin to lose respect for myself was when my urine leaked out of the paper bowl and onto the floor. When the nurse returned, she stared at the mess I had made in horror, and I apologised profusely, hoping that I could talk away the disgust in the atmosphere. But then my father had the misfortune of witnessing what I had done, and never would I ever wish for any parent to have to witness their child at a very vulnerable state like that as if they were older and closer to death than them.

After some time at the hospital, I finally received my diagnosis: Systemic Lupus Erythematosus (SLE). Lupus is an autoimmune disease in which the immune system attacks the body’s healthy tissue and organs. The nurses began to give me a cup filled with pills for suppressing my faulty immune system to swallow every morning, and I began to make a steady recovery. What truly nursed me back to health, however, was the never-ending support of my family and friends. I found the meals served at the hospital extremely hard to stomach, especially since my taste buds grew to deter any hint of salt, so my mother, father and stepfather would bring me homecooked meals with reduced salt or dessert every single day. No matter how exhausted they were from work, they would always pay me a visit during their lunch breaks, before they went to work and/or even after they finished their work shifts. My dear friends brought me food, gifts and letters from my classmates. Even though were times I could not bear to stomach the home-cooked meals my family and friends brought me, they never made me feel guilty for putting their efforts in vain. My brother even decided to celebrate his 15th birthday in my hospital room. I had good days and bad days, but because of all the warmth and solicitude I was receiving, most of my days were bright and outnumbered the dark days as I felt loved by the most important people in my life.

After a few weeks, I left the hospital with absolute joy. I had won a long, hard battle, or so I thought. To this day, I am still fighting, although I have more strength to endure the attacks from the dysfunctional system that is my body. I thrived and managed to complete my application to university, which is something I feared I was not going to be able to do. I had also received offers from universities, so I felt much more secure about my future. Some days I thrived while some days I felt downright miserable, but I had been doing very well overall. I went from barely being able to stomach a rice cake to eating full meals once again. I gained back all the weight I lost from starvation.

I was doing so well that I was numbed from realising my hair was disappearing. Every morning, I would wake up to find masses of hair scattered all over my pillow, although it did not fully occur to me that it was going to be a great loss until there was little to nothing left. Even though my mother had encouraged me to purchase a wig in preparation and some of my peers pointed out that my hair was extremely thin, I did not bat an eye as I was doing my hardest to remain positive. At this point in time, I had realised that it was my stress and negativity that had put me in this mess in the first place, therefore I decided to completely facing my situation head-on as I feared confronting reality would only cause my lupus to flare up out of stress, so I did not face the truth until it was too late. One morning, I looked in the mirror and saw that most of my hair was gone. I felt like a queen rendered useless without her crown. My hair plays a rather significant role in my identity, so I felt as though my identity was shed from me. I had my hair dyed many times in the past as it was a way for me to express myself, but now, that was all gone.

Still, I attempted to hold my head up high, although I did not want to go to school and expose my vulnerability, so I awoke my mother in order to ask for a scarf to cover the sparse forest that is on my head. Having to admit that I was losing a crucial part of my identity made me crumple into tears. I felt like my world was falling apart. My mother did her best to comfort me while showing me how to wear a scarf to cover my head in a ‘beautiful’ way.

I have now been on this Earth for 18 years, and I have developed a greater appreciation of life, although it did come with a cost. I initially held the belief that I was merely a useless hollow shell of myself, and when that belief took physical form and had a toll on me, I realised that I was so much more. While I am upset by the fact that this realisation ended up costing my hair and my health and increased my dependence on not only medicinal drugs, but also on my family and friends, this experience was much-needed in order to improve my outlook on life. Still, there are times when I find myself with dark thoughts at night. I often worry about how I will never find love because of my hair (or rather, lack thereof) or my chronic illness being far too much of a burden for a significant other to bear and I have stopped going to the gym completely as I am afraid my hair loss will be discovered by other people. It would be easy for me to simply state that I realise that my identity is not strictly defined by my hair and that I am more than just my hair, and yet, that is not how I truly feel. My hair and strength will grow back eventually, but in the meantime, I remain partially unsure of myself as an individual. Another thing is that I had received praise for my weight loss. It did not matter that I was severely ill and unhealthy; all that mattered was that I was thinner. Then I became healthy again after gaining weight, but then along came the body-shaming. This tangled me up quite a bit mentally as it caused me to wish I was confined to a hospital bed again despite how tormenting the whole experience was for me.

While this diagnosis has altered my life quite significantly, I do not wish to let it prevent me from living and enjoying life like an ordinary individual. I would like to go out, have fun and make new friends despite how my increased fatigue may hold me back. I currently rely on my family rather heavily, but I want to become more selfsufficient and I am determined to increase my independence.

My current priority is silencing my dark thoughts regarding my incurable illness and maintaining my newfound positive outlook in life. This should not be a difficult task as I have a strong and secure support system, and that is all that matters.

Even though I still have my insecurities as well as new ones surrounding my disease, my family and friends support me indefinitely. They are joyful that my health has ameliorated and constantly assure me that my individuality is not defined by my hair. I have no doubt that they will be with me as a beautiful garden blooms on my head in the many years to come. They all have my everlasting gratitude as I know that I would have never left the hospital bed without them and my self-esteem would be lower than it currently is.

I am forever indebted to them and I hope I can convey my devotion to them properly in the future as they have served as a reminder for me time and time again that despite the effect it has on my life, I am not defined by my illness.

Image: Mundocolorderosa via Flickr