When Lyme Disease 'Ruined' My 'Perfect' Life
I remember participating as teenager in various Sunday school classes, youth groups, and general life courses in high school where the teacher inquired the following question: “Where will you be in five years?” or “Where will you be in 10 years?”
I remember having a thorough, well-thought-out image in my head of what my life would look like in five or 10 years. I planned to marry straight out of high school at age 18. I thought to myself: “I’m a socially apt, talented, smart, beautiful girl! I’ll snatch a man no problem!” I always planned that I would never date anyone who treated me like less than a queen, and I’d fall in love in a “whirlwind romance,” just like in the romance movies. I’d earnestly mapped out my life. I’d attend college as a music major, while my husband attended for some other high end profession. I’d live in a modest home with perfectly trimmed lawn and flawless flower beds.
By the time I reached age 30 I’d be a successful businesswoman with her own vocal studio, and six children. My family would be the type that wears matching pajamas, and holds hands all in a row at the store. We’d wake up at 7 every morning, never a moment later! My house and children would always be clean my husband would always come home on time. He’d greet me with a kiss, and I’d always be dressed flawlessly with my hair and makeup precisely in place. My children would never complain or make bad choices and they’d all grow up to be successful, well-rounded adults.
As a teenager, my vision for life didn’t include imperfection and flaws. It wasn’t comprised of unexpected pitfalls and adversity. It didn’t encompass imperfection. It didn’t encompass Lyme disease. Lyme disease wasn’t part of the plan.
When I was 18, I wanted a husband, but instead I got a diagnosis.
I graduated high school as planned. I had two scholarships to the school I would study music at. I had a boyfriend, and a circle of friends that I was content with. I was ready to set sail into my “perfect” life. Little did I know that life is what happens after you make plans.
I’ll never forget the night I received that phone call. I was sitting in my small room in my apartment and my mom called to inform me that she had received the test results for the 30 vials of blood I had drawn a week prior to leaving for college. The reality is that I already knew the answer to those tests. I was struggling beyond belief at that point. My fatigue was impossible to fight. My muscle and joint pain made it hard to move from class to class. The daily panic attacks that took place were debilitating, and my endometriosis symptoms left me all alone, in tears, struggling through fits of pain. I lost a lot of weight, and I just kept shedding pounds as the time went by.
Time passed. More tests results came back positive for Lyme disease. In multiple moments of self reflection I thought: “I already struggled to watch my mom deal with Lyme. So why me? Why now? What about my dreams? What about my ‘perfect’ life?”
I came home from college three months into it. I felt defeated. I felt exhausted. I felt depressed. I felt sore and achy. I felt ugly. I felt lonely. I felt unlovable. I felt like a failure. I was in tremendous amounts of pain, and I couldn’t help but feel like it was my fault. I couldn’t help but feel like my dreams had been burned right before my eyes. I couldn’t help but feel like my vision for my life was never ever going to happen. Thoughts recklessly spun in my head on a constant basis: “What man would want a sick girl? I probably can’t even have children. I’m worthless.”
I spent a great deal of time in bed or asleep on the sofa. I stopped doing the things I loved. I stopped being the person I am. Through the pain and survival tactics I used, I forgot about myself. I left my identity in the distant past that I never thought I’d ever retrieve. I suffered excruciating pain flares that left me vomiting, seizing, and screaming desperately for relief. Pain medication didn’t help. For a long time I felt hopelessly aware that nothing I seemed to be doing was working. The panic in my inner being was inevitable. I lost my motivation for life. I found myself in unhealthy relationships because I desperately wanted someone to love me. There were times that I couldn’t walk by myself or stand up in the shower long enough. There were times I couldn’t wash or blow dry my own hair, and there were times I resolved to lay in bed and hopefully die there.
At one point the day came that I found myself in a place so dark, I found that I wasn’t even the same person anymore, and the person that I was I didn’t like at all. Laying around feeling sorry for myself wasn’t working anymore. Complaining about having to take 20+ supplements a day, and other forms of treatment wasn’t working anymore. Negative relationships and my negative attitude wasn’t working anymore.
Don’t get me wrong. We all must face a mourning period of our diagnoses. In no way does recognizing and fighting the negative forces around me invalidate my pain, or mean that I’m not in pain. I’ve struggled tremendously. I still do on some days. But since that dark time, I’ve had to change the way I think.
I got down on my knees one day and prayed with all my heart that God would help me out of this dark place. I began studying my scriptures and striving for understanding of why I’m really suffering so much. I began to develop a habit of those two things, and in the process I began to discover myself again. Not just the me that was in my distant past, but a whole new me that just needed to find enough light to bloom where I was planted.
I have fought a good fight, and I’m still fighting. I’m a changed person, and there’s still more to learn, and more in life to go through. Lyme disease doesn’t have to be restraining to the point where you can’t breathe. Lyme disease makes everything in life a little more difficult. In spite of that, I’ve found that if I look for the light and enjoy the Olympic moments that God blesses me with, it makes the fight a lot lighter and a lot more beautiful.
What I told myself back then about being worthless, ugly, unlovable, and broken were all lies. Lies that tore at me for the longest time. But what I told myself when I was a teenager about having a “perfect” life someday without flaw or hardship was also a lie. In a way, Lyme disease “ruined” my “perfect” life. And I’m incredibly grateful that it did.
I’m 20, I’m not married, and most days I wake up way past the time I plan to. I’m going to school to become a nutritionist instead of a voice teacher. I spend a large amount of my day taking supplements and undergoing difficult treatments. A large amount of the time I don’t wear makeup, and my outfits are less than flawless. I’m still in pain a lot and my energy levels aren’t as high as the average person. I’ve discovered that falling in a true and pure form of love doesn’t happen in a whirlwind, but in a slow progression that grows a little bit every day. I’ve learned that sometimes life is clumsy, awkward, and uncomfortable. I’ve developed a skill at catching the curve balls that life continues to throw at me. That’s life! And I’m grateful. I’ve learned that what I thought I wanted isn’t exactly what I really wanted.
My perspective on life has changed a lot in past year. You don’t get married because it’s easy. You don’t have children because it’s easy. You don’t fight daily battles and search for light on a constant basis because it’s easy. Life isn’t supposed to be easy! The idea that I do things because they’re easy and will make my life “perfect” and “flawless” is ridiculous, and lacks eternal perspective.
I believe God has blessed me with the strength and courage I need to keep pushing through, and to discover a better life for myself. He has blessed me with ability and intelligence to find ways to heal. He has blessed me with life long best friends who love and teach me and understandingly and patiently suffer with me. He has blessed me with talents, skills, and knowledge that I continue to develop. He blesses me everyday with beautiful moments that I will always cherish, because even though I’m sick, I still am blessed enough to have those moments! He has blessed me beyond words.
Lyme disease “ruined” my “perfect” life. But thankfully, Lyme gave me a beautiful, crazy, imperfect, painful, magnificent, glorious life! Life doesn’t have to be perfect to be beautiful. In fact, life is beautiful because it’s imperfect and because we have the opportunity to learn and progress in ways that allow us to understand our full potential. I plan to cherish the perfect moments. Laugh at the imperfect moments. Cry through the painful moments. And smile through all of the in between moments!
I haven’t let go of my dreams for my future. But my dreams for the future have shifted and changed. I have Lyme disease! So what? I believe God has plans for me, and Lyme disease isn’t going to stop me from that beautifully imperfect life that He has in store for me. It won’t always be easy, but in the eternal perspective of it all, it’ll be worth it. Lyme disease may have “ruined” my “perfect” life, but it also helped me build a beautiful life.
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Claire is 21 years old. She was diagnosed with chronic Lyme disease when she was 18. She lives at home with her mother and father who have also been diagnosed with the same disease. Her mother has been suffering excruciating pain for years, and she is now home to walk this journey alongside her parents. Her faith is incredibly important to her and it truly helps her through this incredibly hard journey. She intends to someday heal from this and be able to live a normal, happy life, and she will never lose the desire to spread awareness for chronic illness, help others to see the beauty in suffering, and help people know they are never alone.
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