OPINIONS

Living with Chronic Illnesses

by Eliana Duarte

Life comes with no handbook. No one prepares you for everything- especially when you're diagnosed with six chronic illnesses from the ages of fifteen to seventeen. I am almost eighteen and over the last two years I have been diagnosed back to back with debilitating chronic illnesses. They impact every body system and every aspect of my life. Being so young and navigating the teenage years are hard enough, with friendships, family, school, relationships, jobs, etc.; adding on such daunting illnesses makes being a teenager even more terrifying. The last almost three years have been an unimaginable hell that I have walked through. While I have an amazing support system that I can’t imagine life without; they are not the ones who have to take the thirteen morning pills for you or learn how to write when you forget how because you’re experiencing stroke symptoms. 

While I do have my incredible support system, being ill at a young age is wildly isolating. Most family members just think it is something I will grow out of, and most friends don’t know what to do. They do not hand out guidebooks to sick teenagers, I imagine they are not handing out guidebooks to family members and close friends. I am eternally grateful to have friends that try their hardest to support and understand what I experience on a daily basis. Having strangers say “Oh well, you’re too young to have all of these problems dear!” Oh really? My medical team at CHOP and the countless specialists I see may argue otherwise, but what do I know? I’m too “young” to be experiencing the amount of plight I’ve been through. 

One thing that you are never prepared for and no doctor tells you to prepare for, is the incredible amount of grief you will experience. As someone who became disabled “later” in life (I was not born with any disabilities) I find myself thinking about what life was like before I had to take medicine throughout the day. I remember how it was easier to get out of bed and I didn’t miss so much school. I remember being able to ride my bike ten miles in an hour and  half without any troubles. I also remember not being so isolated from my peers and even my own mind. Trying to be grateful for a body in which all of its systems do not function properly feels like the ultimate betrayal. People say you come home to your body at the end of the day, “your body is your home.” Home is supposed to be familiar and comforting, coming “home” to my body feels desolate and foreign. While I appreciate my body for what it is able to handle currently, I am always yearning for a magic swish of a wand to fix me. 

Most doctors I’ve been to do their best, after they take labs and realize all of my blood levels appear perfect they send me on my way. Their “best” is dismissive and detrimental to one's mental health. Hearing that you're fine when it feels as though you're going to collapse makes you feel like you may be insane. Then, finally when you do find a good doctor they hand you a bunch of scripts and tell you to keep doing what you're doing. While the medication helps, a lot of the relief comes from hard work that no medication can fix. Hearing the same thing every check-up gets to be a little old. I’m holding out for a new doctor that will make an appointment feel refreshing and eye-opening; however, that’s never guaranteed.   

Having a strong foundation of support is going to be your saving grace should you be diagnosed with a chronic illness. This past year I did something I never thought I would be able to do. I went to Costa Rica for nine days and lived life in ways I did not believe were possible. I woke up early every morning waiting for something to go wrong or for a migraine to appear and wipe me out for the rest of the day. Every moment that passed was filled with nothing but happiness and surprise that I was able to push myself. Every moment I spent wondering what would go wrong was quickly dispelled. I felt incredible for the first time in a long time. Hiking one thousand steps in less than an hour was the most daunting activity on the trip. However, with the support of new friends and pushing myself I am able to say I climbed one thousand steps in under an hour. The trip was life-changing; it felt like it gave me a hard reset- a much-needed hard reset. I couldn’t imagine not having gone on the trip. Shout out to Ms. Shernius, Mrs. Conklin, and Ms. DeMuro for helping me every step through the trip.