Getting Through Chronic Lyme Disease

Getting Through Chronic Lyme Disease Having a chronic disease is terrifying. It hurts, not just physically, but emotionally. I've learned that a disease can't define your life. If you let it define who you are, your life will be miserable, and that's all there is to it. But how can we separate a disease with our own identity when a Chronic Disease affects your life so much? I'd like to share my experience so far with Chronic Lyme Disease and we'll learn together. I was seventeen when my health started to get worse. The worry was palpable and constant. My parents and I went to several different doctors, specializing in different things. And every single doctor gave me a dozen scary possibilities, tested me and then told me there was absolutely nothing wrong with me. That I was overreacting. After the fifth doctor to tell me that, I even started to worry if my parents would continue to believe me. I felt like I was broken. I was in severe, debilitating pain and not a single doctor believed me. I had friends ask if I was pregnant and refusing to admit it. I had doctors say I probably had cancer, and a week later tell my mom to get me back to work. Saying I had wasted enough of my parent's money and time trying to get out of work. I'm not joking! I was accused of so many things. But finally, after almost a year of trying, we found out I had Chronic Lyme Disease. When my doctor told me I had Lyme, I actually smiled! I gave a relieved laugh and said, “Oh good, it's not cancer.” She gave me a sorrowful look that I didn't understand then, but do now. The next day my mom and I were calling extended family and friends to tell everyone what was “wrong with me.” And the responses made us realize two things. First off, we knew nothing about Lyme. Second, it was more serious than we thought it was. So, we started researching. And the results were scary. We found out it's chronic. That the symptoms are different for every patient, which means the treatment is different, and there is no easy way to find a treatment that works. That it can be spread to any children I have in the future. That the bacteria inside me can slowly infect and kill each system in my body. After weeks of study we concluded that it was just as scary as cancer. And that this disease could take my life. Now, if you know anything about Lyme you might be thinking we overreacted a bit, since normally Lyme can be cured easily. So, here's a little information. The disease had spread throughout my body so thoroughly that the doctor said it looks like I had contracted it about ten years ago. TEN years of this disease spreading through me. When you first get Lyme Disease, antibiotics will usually kill it. But we didn't know I had Lyme at the time. We didn't go to the doctor, because at first, I didn't show any symptom. They came slowly. Slow enough that I adjusted to each symptom as it came, barely noticing it. So, the bacteria from the Lyme grew, it spread, and then it colonized into one big mass inside me, and started basically, to eat me from the inside. The symptoms did not become severe until I got in a car accident at age seventeen, which jerked, and in a way, activated the Lyme. After learning about the disease, we had to learn how to live with it. And I'll admit, at first, I didn't know how that was going to be possible. All I could think about was everything I could no longer do, and everything that now took so much longer to do then it used to. I was complaining to a friend one day when she gave me some of the most impactful words I have ever heard. She said “The disease isn't who you are. You don't introduce yourself by saying ‘Hi, I'm Katherina, and I have Lyme Disease.' When people ask about you, you tell them your hobbies, your job, what you enjoy doing and who your family is. Eventually Lyme will come up in the conversation, but it's just one, small, aspect of the million things that make you, you.” And she is right. My life does not revolve around a disease. A disease affects every aspect of my life. The difference is small but completely changed my life. Instead of telling people ‘I can't do that', I say, ‘can we do something else instead?' I've found ways to do the things I enjoy even with disease. I've found tricks, diets, medicines, schedule changes, and so much more, that allow me to work full time and go to college full time. I'm still the same person. I'm determined, strong, kind, I still love music and the outdoors. Family is still the most important thing in my life. I still laugh. I still have a beautiful life. Even with, a chronic disease.

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Mike Lyles

Author of “The Drive-Thru is Not Always Faste...

Staresville, United States