4/14/2017 – TOUCHED BY LYME: A teenager seeks answers to a lifetime of pain
Dear American Medical Association, CDC, and all the doctors who have ever treated me,
You failed me, you all failed me. If I was the only one, that should still matter to you. But there are more than 300,000 cases each year—which doesn’t even count the hundreds of thousands of unreported cases like mine.
At the age of 3, while living in Virginia, I suddenly began screaming out in blood-curdling, ear-deafening, excruciating pain. I would point to my feet, the top of my feet and ask my mom to rub as hard as she could. I dreamed of hammers hitting my foot to help my pain. Now, at just 3 years old, should this be what I dreamed of? No, never.
My mom would take me to the hospital or the doctor on days or nights when she felt helpless as her toddler, her baby daughter screamed out in agony. I was tested, and tested, and the more I was tested, the less my doctors would believe in my pain. I was tested for bone cancer, had a spinal tap, countless blood panels. All came back close to normal. So, I would go to the next doctor.
By the age of 11, I had screamed and cried my lungs out. My pain had slowly radiated up my legs to my knees. I felt pain in the bones, in the muscles, in the nerves. That was after a multitude of doctors and specialists had all diagnosed me with nothing. How could it be nothing, I would cry to my parents. HOW?
By the time I was a teenager, the pain had gone into my hips and my shoulders, my back, my neck, my arms, my wrists, in my hands and all the way down to my fingertips. It progressed in duration and intensity, but since no one believed me, I was forced to live in normalcy when my body was screaming that I had anything but that.
At one point, my family doctor looked straight into my 16-year-old eyes and said that I was making up the pain and needed psychiatric help. I left that office sobbing, holding my mom’s hand as she reassured me that I wasn’t “crazy” as the doctor had so kindly put it. She assured me we would find the answer to my pain.
I am now 18. Here are the symptoms I’ve lived with for most of my life: Bone pain, muscle pain, muscle weakness, fatigue, night sweats, tremors, twitching, neck pain, back pain, headaches, forgetfulness, brain fog, extreme menstrual pain, insomnia, hot flashes, jaw pain, vision going black, dizziness, swollen glands, sore throat, excessive hair fall out, trouble breathing, “air hunger,” digestive issues, nausea, blurry vision, anxiety, chest pain, bladder pain, tingling and extreme numbness in extremities, burning/hot skin, freezing hands and feet, difficulty waking up, and an overwhelming need to lie down.
Did I mention that I went to school the entire time? I finished high school with a 4.0 with high honors, was vice president of my school, was in yearbook, played in hand bells, played volleyball, was a resident assistant in the girls’ dorm at my boarding school. Never complaining, but crying into my pillow, telling myself the pain would go away if I could just get through it to the other side.
The AMA, CDC, and all my doctors: you failed me. Every time you said there was nothing more you could do for me. Every time you told me I was faking it. Every time you looked me in the eyes and said “you’re fine.”
Now let me tell you another side of this story. Ever since I was a little girl I dreamed of becoming a doctor. While other girls thought about boys, I thought about healing others. When they asked what I wanted to be when I grew up when I was just a child, I would say to work with UNICEF or Doctors Without Borders in Africa.
I bought anatomy textbooks at thrift stores, had my own stethoscope, and even a pair of gloves just like the real professionals. By age 12, I decided I would go into cardio thoracic surgery.
I dreamt about repairing a human heart, healing the sick, and giving hope to those in need of love, guidance and medical care. I spent my spare time reading about medicine, or discussing surgeries with anyone who would listen, and the one foolproof way to get me to relax was watching a surgery on YouTube.
I still dream about becoming a doctor, but since I can’t hold anything without having tremors, I could never operate. I still dream about becoming a doctor, but I can’t stand for an extended period of time without feeling like I ran a marathon. I still dream about becoming a doctor, but more than that I dream about the way it would feel to be healthy.
Recently, while lying in bed feeling exhausted after a college class, I came across a video of Yolanda Hadid. She was speaking about her struggle to find answers to hers, her daughter Bella Hadid and her son Anwar Hadid’s sickness. When I heard her say, “the doctors would tell me I was crazy, that it was all in my head,” I felt an immediate connection. Her symptoms and explanation of her ailment fit almost all of my symptoms. I texted my mom, asking her if she had ever heard of Lyme disease.
That was a turning point. After 16 years of being told I had no merit to my pain and no explanation of why I felt ill, I have finally been officially diagnosed with Lyme disease and have started treatment. I look forward to my life being different.
Furthermore, I can’t wait for the day I recite the Hippocratic oath. I will not take it lightly as my physicians have. Just because a doctor does not know what’s causing it, does not mean that pain is not real. It only means that you must work harder to find answers to the unknown, for your patients, for the plaque that sits on your wall addressing you as Doctor, and for the human being who sits in front of you looking to you for help, scared, hurt, worried, and in desperate need.
Sincerely, A Girl with Lyme Disease