I’ve been fainting since I was 4, but became symptomatic with Lyme Disease when I was 14. Once that began, all of my other illnesses began to show. It’s difficult to draw connections between the symptoms and the illnesses, but I was first diagnosed with Celiac Disease in 2015 (at 18 years old), then Lyme Disease/Chronic Lyme a few months later, then Fibromyalgia in the spring of 2016. A year later, in early 2017, I was diagnosed with POTS, then this past summer, Lupus.
I frequently missed class in high school, but I was still able to push through my
symptoms. My illnesses didn’t really take a toll until they became truly debilitating. On the first day of second semester of my freshman year at UNCW, I fainted in the middle of WalMart. My body was unable to regulate my temperature, blood pressure, or heart rate,
and I took an ambulance to the ER hoping for answers (because at this time, I was only diagnosed with Celiac Disease and Lyme). For the next week, I laid in my dorm bedroom, unable to leave. I had to crawl to the community bathroom to avoid passing out, and I eventually had to move back home for the semester and switch all of my courses online. I was never able to go back to campus that semester because I was bedridden; bed to couch, couch to bed—that was my daily routine. I couldn’t stand long enough to shower. I couldn’t tolerate heat. I couldn’t walk my dog or ride in a car. My body was completely failing me. I spent 20 weeks in physical therapy to get back to a point where I could walk up a flight of stairs, and sit up for more than a few minutes at a time. I was able to return to campus my sophomore year, but for both the fall and spring semesters, I remained taking online classes. By this past summer, I was finally on the
right medication, diet, and exercise regimen, and am now back in lecture hall classes, living on campus. Through that experience, I was able to discover my passion for writing (prompting me to change my major from Pre-Med to Professional Writing), and further my other artistic outlets: music, drawing/painting, and photography/film.
I think the one thing I would like people to know is just because someone looks healthy, doesn’t mean they feel healthy. People associate sickness with old age, walking-aids (like crutches or canes), wheelchairs, etc., and they forget that not only can children and young adults get sick, they can do so and show no physical signs of it. Even when I lost 15 pounds in a month from being unable to eat and leave my house, I still got comments that I “didn’t look sick.” “Sick” doesn’t have a look, and once people begin to accept that, I think the disabled community will have an easier time gaining respect for what we go through. Most of the time it feels like we’re fighting for everyone to believe us; doctors,
family, friends, professors, etc.
My illnesses have given me a lot of insight. I feel I’m a much more patient, empathetic, and loving person because of them. I look for the positives in every situation and in everyone I meet. I also have a much easier time expressing my emotions and being vulnerable. I have a confidence that I never had prior to being sick, and I’m unafraid to be vocal about what I go through.
I would tell someone who is newly diagnosed that it’s okay to be scared. It’s okay to not know what to do, or how to express your anger. It’s okay to take a day, or a week, or a month, or however long you need, to grieve. Some days you’ll question “why me?” It’s not something that will be easy, but it will get easier. You’ll learn ways to cope, you’ll find expressive outlets, and you’ll soon realize the many positive ways that your illness(es) has shaped you. You’ll learn how to speak up for yourself, speak up for others, and you’ll gain so much perspective in doing so. While you will hate what it’s put you through, you’ll begin to love the person it’s made you become.