Why I'm Thankful for My Journey With Lyme Disease

In January of 2017, I was diagnosed with Lyme disease after years filled with many medical tests and no answers. The day I received a diagnosis, I was overjoyed. I had been sick my entire life and now everything I experienced made sense. I now knew why I developed sensory processing disorder as a toddler. I now knew why I had gastrointestinal dysfunction throughout my life. I now knew why I always had viruses and bacterial infections. Lyme disease was the missing puzzle piece and now I had it in my possession and could cherish it. I finally had the puzzle piece after years of feeling like I was on a scavenger hunt.

 

I was not excited because I was ill, but because I finally understood what was happening to my body. I was excited because somebody actually believed I was sick and understood my struggling, unlike the other doctors who could not find answers and told me I was just experiencing stress. It felt like the frustration of others doubting me was finally lifted off my shoulders.

After my diagnosis, I began researching the disease and treatment options. The relief I had quickly faded into despair. I read many articles that stated that treatment is difficult to find because many doctors do not believe in Lyme disease or refuse to treat you as a result of the guidelines set by the Infectious Disease Society of America (IDSA). I discovered that I would need to find a Lyme-literate doctor (LLMD) to effectively treat my Lyme disease.

I was saddened to find out it takes months to get an appointment with a LLMD and even then, they might be rejected by insurance. In addition, I discovered I would experience a Jarisch-Herxheimer reaction during treatment – which results in temporarily intensified and possibly new symptoms of the disease. I was devastated to find out my condition would have to deteriorate in order to improve. I was growing weary of being ill and I did not want to endure it any longer.

The frustration did not end there. When I was diagnosed, I was experiencing a large amount of discomfort due to my symptoms. However, I was unaware that I was on a slippery, downhill slope. A few weeks after my diagnosis, my body’s reaction to the disease dramatically changed. Many new symptoms appeared and I had never been so terrified in my entire life. I would wake up in the morning and I was unsure if I could move. I couldn’t focus when somebody was talking to me. My blood pressure was through the roof. My heart would race at random times and would even skip beats. One day I ended up in the emergency room out of fear of having a heart attack.

I was distressed about my situation and wanted to understand why I had to have this journey. Why couldn’t I live life like a normal 20-year-old? However, simultaneously, I was thankful. I was thankful I had received a diagnosis when I did and was not clueless about what was happening to my body. At that moment, I realized there are many people out there with this disease who may have no idea they have it. At least I knew what I was dealing with and that I could improve with treatment – my life was not over. If I had not received a diagnosis, I would have been a nervous wreck and would have believed I was dying.

My health decline due to Lyme disease has taught me a valuable lesson: life is short. For most of our lives, we believe we are invincible. We believe that time is endless and we will always have the opportunity to fulfill our dreams. Lyme disease has taught me that if there is something I want to do, I need to do it now while I’m still breathing. Before my diagnosis, I was a quiet person who never took risks because it terrified me and I thought there would be time to take risks later in life.

I have realized that tomorrow is not promised and I am grateful that Lyme disease has shown me that. Now, I have become a different person. Lyme disease helped me make sense of why I was sick my entire life, which was incredibly eye-opening. In addition, I never pictured myself gathering enough courage to talk about my experience and tell people the truth about misunderstood Lyme disease. I never pictured myself being motivated or vocal enough to write this article promoting Lyme disease awareness.

In closing, I would like to thank Lyme disease for molding me into a brave woman with a voice. Without you, I would still be that quiet, puzzled girl who refused to live life and only made safe decisions.

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Thinkstock photo via Jupiterimages.