When Chronic Illness makes you a Full Glass Kind of Person

In 2017, I felt unstoppable. That summer, I traveled to Germany and London, and a week after my return to the states, I flew to New York where I was a camp counselor for children with social and behavior challenges. Two months later, I returned to Ohio, took my GRE, went to my future job’s interview, and immediately moved back in to the dorms to begin my senior year of college. That fall, I took a heavy course load, was a mentor through a local elementary school, completed training for my new job, applied to grad schools, and worked 2 different jobs. I liked to think of myself as the energizer bunny back then- I just kept going, going, going.

The thing with batteries is that no matter how long they last, they do eventually run out of charge. That happened to me, and things haven’t been the same since. I graduated from college a year early in spring of 2018 and moved to Charlotte, North Carolina for grad school at the end of that summer. Grad school is difficult, but fall 2018 proved to challenge me in different ways as well. I became increasingly sicker. I have always had a lot of different health issues that didn’t seem to relate and around the start of grad school, these issues became worse, more frequent, and confounded by new health issues. By February, I had a diagnosis of lupus.

Spring semester of my first year of grad school was rough. If I wasn’t at work or in class, I was in bed. There were several days I missed work and class to stay in bed. I felt awful. I was constantly exhausted no matter how long I slept and almost always in pain. As someone that always went above and beyond, planned out everything in advance, and gave everything 110%, I was barely functioning by doing the bare minimum and taking things day-by-day. I didn't have the energy to brush my thinning hair and ended up cutting five inches off of it. Wearing my contacts or putting on make up was out of the question. One medication caused me to gain twenty pounds in a few short months.  I was also put on medications that made me sicker. Most medications for lupus are borrowed treatments from other illnesses; I was put on a weekly immunosuppressant that at much, much higher doses, is a form of chemotherapy. I would be bed-ridden for 2-3 days after taking it. I dropped a class, missed multiple classes in a row, and on the very last day of class, I ran out of the room because I knew I was going to get sick. A classmate sweetly texted asking if I was alright, but it was embarrassing when my invisible illness had gone basically unnoticed until then. After that, I almost dropped out of grad school, even telling the program director of my decision.

Three things changed my mind. First, I was offered a summer internship, which would have caught me up in the program and made my load easier during my second year.  Second, my university had a school shooting. Peers I never had the privilege of meeting died.  It was a reminder of how short life can be and that grad school was my dream. I’ve worked too hard to get where I am to give up on a dream now. Third, I had a conversation with my niece and one of her family members, who looked at my college bumper stickers and told me how my niece still gets excited when she sees my undergraduate university’s name and still tells everyone that she got to see me graduate. It was a reminder that I am a role model and not a quitter. Sure, there’s a difference in quitting out of laziness and taking a break due to illness, but neither is me. So I didn’t drop out, and no matter how hard grad school is with chronic illness, I haven’t regretted it since.

Since then, I have probably had more bad days then good. I have developed new symptoms, had a pulmonary embolism scare on my birthday, and I regularly struggle to get through a busy schedule. On top of lupus, I have other health issues that can make any day extra difficult; I take over 10 pills a day, give myself a weekly injection, and will likely be starting a monthly infusion soon. As a result of lupus- related inflammation, I developed carpal tunnel syndrome in both hands and have to wear braces at night when I sleep.  I frequently cancel or change plans, take a lot of naps, and plan around my illness. There is nothing that I do without considering my condition first. 

Just this weekend, I went on a trip with my best friend to the beach. It was one of the best weekends of my life. I read an entire book on the beach, ate amazing food, went shopping, and most importantly, enjoyed time with one of my favorite people. As much as I may have wished otherwise, the baggage of my health came with us. I had to pack all my medications, give myself my shot while there, limit my alcohol consumption, lather myself in SPF 70, and wear a hat when possible. Worst of all, I had to deal with the overwhelming fatigue that prevented me from climbing the stairs to our rental at times and repeatedly sitting down out of pure exhaustion while shopping.

Despite all this, I still consider this past year to be a good one. I wasn’t flying off on new adventures, but I have learned how strong and resilient I am. I’m going to get my Master’s degree next spring when I could have quit.  I’ve maintained a 4.0 in grad school, a difficult feat by itself, while also dealing with severe health struggles. I live so far away from the majority of my support system, but aside from missing my best friend’s hugs of support, I have not felt alone in my fight against my disease.  I’ve grown closer to the people who have remained by my side this past year. I could never express my appreciation enough for their support.

A few years ago, most people would probably have said I was a glass half empty kind of person. A year ago, I saw myself as a glass half full kind of person. The thing is: there’s a third option. Scientifically, that glass is full. It’s half full of liquid (the typical half full assumption that is positive) and half full of air molecules (the typical half empty assumption of being negative). I am a full glass kind of person. I can’t ignore the negatives in my life because my health would overtake the positives pretty quickly. I may have to consider my health in every aspect of my life, but I am as sure as hell not going to let the negativity of my health take over my life and positive perspective. Lupus and my health have taken a lot away from me, but it won’t take my spirit and determination.