At age 12, I was diagnosed with scoliosis, an abnormal curvature of the spine, during a school health screening. My parents and I then met with an orthopedic doctor to determine my course of treatment. After x-rays and an examination, the doctor spoke to my parents providing them with options for my care, one of which included participation in an experimental study using electrical stimulation. As my parents asked questions to gather information for their decision, I felt the need to be a part of the decision, especially if the adults in the room were actually considering electrocuting me! I mean every 12-year-old knows not to put your finger in a light socket! So, I began peppering the doctor with my own questions. Later, my parents and I sat together and discussed the pros and cons of each option until a mutually agreeable, electricity-free decision was made. It was my first experience of being my own health care advocate, and I learned the importance of conducting research, including asking questions, and going with your intuition.
I was stricken with papillary thyroid cancer at age 37. It was in the aftermath of my cancer treatment that I learned another important lesson about advocating for myself. I began to experience heart palpitations, a fast pulse, and anxiety - all signs of hyperthyroidism. Unfortunately, my primary care physician had moved out of the area, and I could only get in to see a nurse practitioner, whom I had never met before. I explained my history and showed her my pulse readings that I had measured throughout the week. Her response to me was that it was not her problem. She told me that it was a result of my thyroid medication dosage and that I needed to be treated by my endocrinologist. She would not listen. She would not help alleviate the symptoms. I felt frustrated and alone.
The next week I went for my checkup with my endocrinologist and raised the same symptoms with her. My resting pulse had now been over 110 for a few days, and my heart palpitations were beginning to scare me. Surely, I would get assistance! My endocrinologist replied that she would not change the dosage of my thyroid medication as my TSH levels were perfect for thyroid cancer suppression. As I pleaded for her to help alleviate the side effects of my therapy, she told me to go back to my primary care physician for assistance and walked out the door.
From this experience, I learned not to be afraid of firing a doctor. In fact, I tell him/her exactly why he/she is losing my business in the hopes that it will help him/her be a better doctor. If my doctor is not listening to me, then I choose another doctor who will listen. After the episode above, I quickly found a new primary care physician knowledgeable about thyroid issues. I knew she was the right doctor for me when she told me that she took seriously her responsibility to be my advocate. She has never let me down! She quickly got me in to see a cardiologist, who prescribed medication. She even helped me find a new endocrinologist, one who patiently discusses all my symptoms and works with me on a plan to alleviate them.
I am my own patient advocate. Are you?