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Going through College with a Terminal Illness

July 21, 2019

Before I was even born, my body was already covered by wounds that are easily mistaken for third degree burns. Before I was even able to enunciate my name, I had to go through surgeries and daily bandage changes that were tremendously painful. After minutes of being born I was diagnosed with a life-threatening skin condition called Epidermolysis Bullosa (or also known as EB).

 

This skin condition is so rare but it has taken the life of so many, some being very close friends of mine. The doctors thought that I wouldn't make it past some days, like most EB patients but here I am nearly twenty years later completing my four years of University, something that most EB patients are unable to accomplish due to the physical limitation and immense pain we go through every day. Having EB is not easy, it’s a daily obstacle that I must conquer. EB is something I cannot hide nor have the option of whether I want to share it with others (or not) because it’s so captivating to the eye and anyone who looks at me will notice the difference in

 

my physical appearance.

 

Not only is the pain difficult. Not only are the continuous wounds overwhelming but the stares, the questions and people’s assumptions are what make this journey even more challenging. We all know that college is a JOURNEY. College is the place for the individual to grow as a person, to find their purpose and to gain skills. Typically, the college student worries more over getting the classes they need than what others may think about them or if they’ll be accepted or not. The second scenario was my case.

 

My past experiences of walking through a school campus or entering a classroom had all been so traumatising that I feared of college being the same. I feared of people asking, “what happened to you?” rather than being interested in my major. Not only has acceptance been a fear of mine but prior to starting college and during my freshmen year of college, I wondered if it’d really be worth it. I wondered if companies would really hire someone with scars, bandages and in a wheelchair DESPITE having the skills required for the position. I wondered if I’d be able to handle daily bandage changes, bad pain days and doctors appointments alongside all the homework’s and tests assigned. 


 

In a few months I’ll be starting my third year of university and thankfully, through the past two years of experience, most of my fears and questions have been answered. People have been more than accepting. I realised people in college are adults that often times have kids, have jobs and don’t have time to wonder why I wear bandages. I have also realised that the only acceptance I truly need is self-acceptance, not from anyone else. I have yet to master the double life that I live. Being a chronic illness patient and a college student is not easy. Sometimes I’m writing essays while my mom is doing my feet bandages. Or sometimes, I’m studying through my phone as I wait for my iron infusion to finish. I HAVE been able to balance everything, but it has not been simple. 

 

My family and I, feel very proud of myself for fighting and deciding on continuing with my education regardless of my challenges. I feel very proud of myself that even though EB brings pain when completing the daily tasks others may take for granted, I've still kept my determination and fought through to accomplish my dreams. I am the first one from my family and one of the few from the EB community to attend college, let alone a four year college. Every day is a challenge, it’s been hard having to go through surgeries, treatments and endless bandage changes knowing that this is my life and unable to do anything to make the suffering easier. From the bottom of my heart I hope that my determination and eagerness of completing my education no matter the obstacle inspires and motivates other college students to do the same, with or without an illness.

 

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