I’ve always been scared of going to the doctor. Ever since I was little, I would make my mom promise that no shots or finger pricks would be involved in an appointment, even for routine check-ups. I was a firm believer that doctors were up to no good, regardless of how cool their shiny gadgets and big white coats looked. Nowadays, my views of doctors are much different. I’m not so envious of their gadgets and coats because I understand the responsibility that comes with them. But more importantly, I look forward to the days when I go into their offices because of the promise of progress in this journey of mine.
In August of 2012, I moved to Orlando to start my freshman year of college at UCF. I was beyond excited to start a new chapter of my life and had no doubts that UCF was the place for me. I was blessed to be placed with two amazing roommates that I still consider to be dear friends, but by October of that year, I didn’t feel like myself no matter how much fun we had together. I struggled with keeping up the energy to walk to class and do my homework – all I wanted to do was sleep, and that’s not how college is supposed to be. Eventually I made my way to the doctor, and they immediately diagnosed me with severe anxiety and depression. This was such a huge shock for me, and by the end of the semester, I decided it was time to come home.
Thankfully, home holds a wonderful university, and I found my niche at UNF. I love the campus and classes here, and I have a wonderful support system of friends and family around me on a constant basis. But even with all of these positive changes after transferring home from UCF, I still didn’t feel right. I was still tired all the time, was constantly short of breath, had full-body muscle pains, and by February of 2013, I started having major allergic attacks.
We began a long road of appointments with specialists when a diagnosis couldn’t be made – I moved from a dermatologist, an allergist, the primary care doctors at UNF, and finally to a rheumatologist. The dermatologist diagnosed hives, the allergist told me my lungs were functioning at 50%, and the primary care doctors did their best to treat the many bouts of pneumonia and respiratory infections that I caught because my immune system was so stressed. I had more blood tests than I can count, and several cancer scares because of all of the conflicting medicines and tests from the multiple doctors on my case. One doctor took a rapid mono test, and it came back negative. The rheumatologist believed that an autoimmune disorder could be the cause of all of this, and proceeded to order 27 blood tests to confirm.
Not long after, I woke up in the night with a swollen mouth and could feel my throat closing up. After I used my Epipen and my mom rushed me to the ER, the hospital kept me for observation. The doctor there was seriously concerned and we knew that this was going to be a much longer process of searching for answers than we originally planned. The only thing that seemed to help keep me out of the hospital were rounds of prednisone, so I struggled to finish my classes and spent the month of May mostly in bed. Anyone who knew me could tell that I looked and felt sick. Eventually, the rheumatologist’s tests came back as inconclusive, and he tentatively diagnosed me with fibromyalgia. We tried nerve-blockers that ultimately made the pain worse, and when it came down to a lack of answers again, the rheumatologist lost my trust when he said, “Maybe you’re just sad.”
My family and I were completely fed up with doctors shrugging their shoulders at us, and we knew that there had to be an answer somewhere. A generally healthy and previously happy nineteen-year-old should not be inexplicably sick for months on end. Thankfully, a family friend referred us to a neurologist who agreed to look at my case. We felt like this was the best step forward and went to see him in September. He was very attentive to my entire medical history and made me feel like I was finally being taken care of. Even better than that, he told me that the rheumatologist was full of it and that he knew there was something more going on with me than a prolonged case of depression. Unfortunately, he thought there was a chance that I could have MS or something very serious. He ordered an MRI and found “a concerning growth” in my sinuses. When I heard this, I was scared beyond belief. I had already been sick for so long – I couldn’t imagine it getting any worse. A CAT scan was done to get a better look at my head. And then, the best news of all came. The growth was nothing consequential – it turned out to be a tiny build-up that wouldn’t do me any harm. Even better than that, when he looked back at my entire history, he found that all of my symptoms lined up with recorded cases of severe mononucleosis – and sure enough, the Epstein Barr virus was still in my system.
I’m not sure where I caught this horrible case of mono from, and I’m even less sure of why it took so long to diagnose. These are answers that I will never have. But I’ve learned that progress does not always equal answers. Answers are concrete. Answers put an end to your questions. Answers can deny your fears, but they can also confirm them. They can either lay your worries to rest or prove that your anxiety was right after all. But progress isn’t like that. Progress is not black and white. Progress is accepting partial answers that come with more questions. Progress is knowing that sickness is not simple, and that baby steps are really quite big. Progress is realizing that each doctor visit, each lab test, and each tentative “yes” or “no” in this process is just another step down the road to health.
Answers aren’t what I’m looking for anymore. From the very first time I got sick, it was clear that this wasn’t going to be an easy fix. So progress is all I ask for. And thankfully, it’s been provided. I’ve had a lot of scary possibilities and potential battles checked off my list, and for that I am so grateful. I first felt sick in October of 2012 – its now March of 2014 and I’m still not fully well. The neurologist predicted that I would be back on my feet by Christmas in 2013, and that was mostly true. I felt alive again and was able to spend time with my loved ones and truly feel present and well. But the mono still comes and goes. I have flare-ups from time to time and am still part-time in school. I regularly go to counseling to manage my anxiety. I’m working a part-time job that I love and I try my best to stay active, but I have to be extremely careful to get enough rest and to not over-tax my body. It’s been almost a year and a half since I first got sick, and I’m not sure when I will feel 100% again. That’s hard. But I no longer think of myself as “sick” and my health isn’t holding me back from living the life I want to anymore. There have been so many beautiful moments this year, even in the midst of the trials, and so many more to come.Those are major blessings.
I look forward to the day when “healthy” is my reality, and I’m thankful that with each day I’m starting to feel a little bit closer to where I want to be. It’s taken me quite a while to write this story down. It’s hard to put a whole year of my life into a few simple words, not to mention a year that, for the most part, didn’t make sense even to me. It’s easy to hear “mono” and fit my story into a tiny box of understanding. But my story is different…and I hope that by telling it, there comes a realization that no story is the same as another. One person’s battle with sickness is not the same as another’s. That is true for any and every ailment under the sun, whether it be cancer, depression, MS, obesity, heart disease, diabetes, accidents, disabilities, meningitis, mental disorders, autoimmune diseases and on and on. Sure, for some people, mono is the “kissing disease” that kept them out of school for a few weeks. If anyone has to have it, I pray that their experience with mono is exactly that. But for anyone who struggles with something more long-term, more serious, more physically and mentally taxing – my heart goes out to you. It’s one thing to feel for someone who is struggling with sickness, but it’s another to know the incredible sense of worry, doubt, fear, struggle, and heartache that comes with having experienced sickness first-hand.
But there is hope here. Regardless of what you struggle with or what the outcome is, you can choose to have hope. It’s not something that you have to wait on or be worthy of or even truly feel. It’s something you can decide to have and simply have it. To make it through anything in this life, you have to decide that you will. There were many days that I just wanted to curl up in a ball and stay there for a while. Those days still happen, and all of us know that feeling. If I’m honest with myself, there are some days that I did just curl up and refuse to move. But that’s okay, because there was never, ever a day when I stopped hoping that things would get better. And eventually they did. For some people, it won’t get better here. But even then, there is faith to be found in the knowledge that there is still hope after “here.” Ultimately, I’m thankful for what I went through. I wish it hadn’t been so hard, but it’s not my job to decide what happens in this life. I’m a more compassionate and understanding person because of my sickness, and I learned some invaluable lessons along the way. It’s okay to rest. It’s okay to take time. It’s okay to look at life as a marathon instead of a sprint. It’s okay to do things differently than everyone else. But it’s not okay to give up – at least not in my world. Because there is hope, and there is progress, and that’s enough for me.