My Battle With Lyme Disease
Updated: May 27, 2022
A few years ago, I was diagnosed with Lyme disease. I was elated.
Lyme disease is a bacterial infection most commonly spread through tick bites. It initially presents with bullseye-shaped rashes around the bite location. Symptoms include muscle/joint pain, headaches, fatigue, and swollen lymph nodes. It can spread within the body when untreated, causing severe joint pain and then later spread to the heart and nervous system. It can manifest as an autoimmune disorder and weakens the immune system. Lyme disease is treated with antibiotics but has no cure.
So why was I elated to have such a glim and inconvenient diagnosis?
For as early as I can remember, I have had bodily pain. At just eight years old, I remember crying in despair on the three-block walk home from the laundromat. I remember my grandfather reprimanding me because I would constantly sit down while sweeping. Whenever I finished cleaning, I would feel overwhelmingly exhausted, as if I had spent an entire day fighting waves at the beach. Sitting or standing in one spot for longer than a couple of minutes felt like it made my bones lock. The slightest breeze didn’t just make me cold; it made my bones hurt as if they were hollow.
Like any concerned parents, my parents took me to the doctor to determine the problem. Maybe they ran tests; I’m not sure. I remember mainly getting dismissed as a child who didn’t know their limits, thus overworking my own body. With this in mind, I started doing less in hopes of extinguishing the pain, but that didn’t work.
After years of doctors telling my parents and me that my pain was in my head, even my parents started to doubt me. I was still a child, and the people advocating for me no longer believed me. I was devastated.
In my sophomore year of high school, I managed to advocate for myself enough to convince a doctor I was in pain. I was diagnosed with shin splints. At first, I was relieved, but then I googled it. Shin splints are a pain in the legs most common in athletes caused by overworked muscles. By 15, I had abandoned any physical activities I enjoyed doing. I was pretty sedentary, so unless walking the halls of a small high school resulted in overworked muscles, I knew that the diagnosis was wrong.
At this point, most of my pain was in my legs and feet. Every step I took hurt the bottoms of my feet. If I ignored the pain long enough, eventually, I would get shooting pains up my shins. More and more parts of my body would begin to hurt, down to the joints in my fingers.
Sometime later, I managed to get a podiatrist appointment. She said I had collapsing arches in my feet which can cause pain when wearing the wrong shoes. I would constantly change my walk to accommodate my aching feet, which would cause pain in my legs and hips. However, she couldn’t completely confirm the diagnosis because she needed to run a test that my insurance did not cover, and my family could not afford.
I changed my shoes as a result and was more conscious of how I walked. If I were in pain, I would try my best to sit down a while before continuing. This would alleviate the pain and help a little. It would take me longer to complete tasks, and I moved slower than others, but it was better than before.
The pain was not my only symptom. I was tired, whether I had an entire night’s sleep or not. Any teacher, classmate, friend, or family member who ever spent time around me will tell you I was constantly sleeping. Sleeping was the only way I felt reenergized, but after 2 or 3 hours, I felt like I needed another nap. I felt like I was sleeping my way through life and missing all the beautiful things life could bring.
During my freshman year of college, I stopped going to a pediatrician. At my new doctor, I explained my pain, expecting another instance of dismissal. To my astonishment, she believed me. She ran some tests and concluded I had Lyme disease. She described it, and I googled it, and finally, I had a diagnosis that felt right. I took a round of doxycycline, which was terrible; I was constantly nauseous. Then, I felt a little better. I still had pain, but nothing compared to before.
Lyme disease has no cure, and my pain won’t go away, but someone finally believed me. I knew I wasn’t delusional or crazy, and my pain was real.
I was elated to finally have an explanation.
Lyme disease is often misdiagnosed, and I’ve seen articles of doctors claiming Lyme disease is not an actual diagnosis. I never had the bullseye-shaped rash, and I can’t remember being bit by a tick. I’m not sure how I managed to get this disease. My doctor still has the assumption that I have some other form of autoimmune disease because of how long I went untreated and how weak my immune system is, but that is yet to be confirmed.
I know that my diagnosis does not necessarily change my symptoms. I will always be in pain and tired, but now I know why.