For most high school students, life is filled with classes, after-school sports, hanging out with friends, planning for prom and applying for colleges. For me, high school was filled with doctors, hospitals, hours and hours of treatment and days sick in bed. My mysterious symptoms began in 2010 when I was a sophomore in high school. It began as joint pain, but when the rheumatologists quickly dismissed my symptoms, I figured joint pain was just something I should dismiss as well.
My life seemed to be mostly normal for a year following. Then, within the first few months of my senior year of high school, everything changed. Suddenly I was plagued with hives, fevers, extreme fatigue, excruciating joint pain, and nausea. I lost my ability to read. I could not focus on a conversation long enough to participate in it. I went from a straight A student to failing classes. I went from being an all start basketball player with college scholarships lined up to being bed-ridden twenty hours a day.
When you are sick, you expect to go to a doctor where they will do their best to diagnose and treat you. When I was sick, I went to doctors, but they would not listen to me. As a seventeen-year old, having an adult medical professional tell you that you are crazy and sending you on your way is the worst form of degradation. This went on and on. I saw about 10 doctors before I finally found one that would take me seriously.
Flash forward. I am now twenty two years old. I have suffered from chronic Lyme Disease symptoms every single day for seven years. I have seen multiple specialists all over the United States. Since being diagnosed with Lyme disease, I was also tested and diagnosed with an autoimmune disorder called Postural Orthostatic Tachycardia Syndrome (better known as POTS) by the Mayo Clinic. Treatment has been part of my life since I turned eighteen-oral and intravenous medications, supplements, herbal remedies, alternative treatments-however, these treatments have not stopped the symptoms. I still deal with extreme fatigue, joint pain, fevers, nausea, headaches, brain fog, loss of appetite, cognitive issues, severe depression, anxiety and more.
My life has completely changed because of my diagnoses. After graduating high school, I was forced to take a year off to forgo treatment instead of starting college like my friends. However, with the support of my family, I have since earned my Associates’ degree and am only one year away from my Bachelor’s degree. I now attend college full time on top of continuing my treatments.
I have learned so much because of chronic Lyme disease. From the age of seventeen, I have learned to be my own advocate. Medical professionals are not only under educated about Lyme, but many refuse to acknowledge it at all, let alone attempt to treat it. There have been times when I have challenged a doctor and really had to push for my own health. I have been kicked out of medical offices for disagreeing with doctors. Secondly, I have learned to be alone. Chronic illness is isolating, and I have learned to not only be okay with being alone, but to enjoy it. Another thing I have learned is how to manage my symptoms well enough to function. I am what is considered a “high functioning Lymie.” It is actually very rare for someone my age with chronic Lyme disease to attend college full-time like I do.
There are a few things I want you to know. First, just because my symptoms are not always visible does not mean I am faking them. I have become quite the actor, and make up and nice clothes can hide a lot. Secondly, a person with a chronic illness often struggles to maintain relationships with other people. For me, after going to classes and doing treatments, I am often too tired to get out of my bed. This does not mean I do not want to spend time with others, it simply means I cannot.
Finally, do your research. As someone who suffers from Lyme disease and continually advocates for myself and others, I can tell you there is not enough education about Lyme disease considering it is one of the fastest growing infectious diseases in the United States. Since Lyme disease is caused by ticks, be sure to check for ticks EVERY SINGLE TIME you, your children, and your pets are outside. KNOW YOUR SYMPTOMS. Preventing Lyme disease is so much easier than treating to treat it in its chronic disease stages.
Photos courtesy of Danae Brinks.