I am a recent college graduate with a passion for creating compelling, unique content.
|EDUCATION: BA in English, Nonprofit Studies minor from James Madison University||BLOG: The Chronicles of Emily|
|CERTIFICATIONS: None provided||CURRICULUM VITAE: None provided|
No one ever tells you how to prepare for being chronically ill.
It’s not something anyone expects to happen, and it’s especially not something anyone expects to happen to a 16-year-old. Yet, at the end of my junior year of high school, I found myself suddenly sick with a mysterious illness that no one could diagnose. As someone who has always liked to prepare for everything, this was certainly not a part of my plan.
For 10 months, I found myself going to and from doctors’ appointments, with doctors only shrugging their shoulders and prescribing more tests, the results always normal, and offering me medications that never worked.
I’d planned out my entire senior year, from my extracurricular activities to knowing where and when I was going to submit my college applications, and I knew the college I wanted to attend in the upcoming fall. Needless to say, all of that planning was useless as I found myself just barely getting by.
It became routine to go to school every morning, get sick in the bathroom and then go to my first class. When I would tell someone that I’d been sick for months, they’d jokingly ask if I was pregnant, which I didn’t find funny in the least, but heard more than once. No, I was not pregnant. Just miserable.
More symptoms began to creep into my life: joint pain, dizziness and an overwhelming sense of fatigue that no amount of sleep could help. There were points when I worried whether I would finish my senior year and graduate on time. My grades weren’t terrible, but I had missed class many times, and my symptoms were only increasing. Some days felt hopeless.
A diagnosis came on a cold, snowy March day in Rochester, Minn. After having seen dozens of doctors, a few of whom had said matter-of-factly that there was nothing wrong with me, that it was all in my head, I was given the diagnosis of dysautonomia — specifically postural orthostatic tachycardia syndrome (or POTS) — at the Mayo Clinic.
My autonomic nervous system, which was supposed to regulate my heart rate, had decided to stop working properly. When I stood up, the blood pooled in my limbs instead of going to my brain. To try to compensate, my heart rate would skyrocket, causing dizziness and nausea, while the syndrome itself caused the joint pain and myriad other symptoms to appear.
It wasn’t the diagnosis itself that mattered, but simply the fact that I could now treat what was wrong with me. The doctors at the Mayo Clinic were kind, understanding and, most of all, they were willing to help me. As I left the clinic, my doctor told me, “Have a happy recovery!” To say I felt grateful would be an understatement.
It’s been nearly two years since I was diagnosed. Even though things didn’t go as planned in high school, I went to prom, I was able to graduate on time, and I’m now starting the second semester of my sophomore year at James Madison University — my dream school.
Do I still plan? Of course. In fact, I probably plan more than most people, since I have a limited supply of energy, and once it’s spent, it’s gone. My friends and family are well-aware that I might have to break plans sometimes and that I may do things a bit differently to accommodate my illness. I’ve realized, though, that planning something doesn’t mean it’s going to happen that way and that, really, that’s okay.
I will admit that I’d rather not have a chronic illness. It’s always a little awkward to explain to new people that, even though I look normal and healthy, I’m not.
I will say, though, that I’ve learned so much through having a chronic illness. I’ve learned that I am not my illness and that it doesn’t define me. I’ve learned how to laugh about relating to older people about beta blockers and compression stockings, and to joke about my brain fog, which sometimes causes me to mess up even the simplest of sentences. Sometimes, it’s just funny and, if I can’t laugh at myself, who can?
Just because I can’t do things in the same way as someone else doesn’t mean I’m incapable: It just means I have to be a bit creative. I now know that sometimes you have to forget about your plans and find a new way to live. A new way to live doesn’t mean giving up, though; it just means learning to allow yourself to fall and to laugh as you get up again.