Until you’ve walked in the shoes of a patient, you really have no idea how it feels.
You can attempt to channel their emotions and imagine their confusion, fear, and pain, but nothing can replicate the weight of reality behind the actual experience. I've been creating consumer and patient communications for more than 15 years with the promise of understanding the patient’s plight but what I’ve learned is that, until you’ve experienced your own health concern, it’s almost impossible to have full empathy for the patient experience.
A few weeks ago I visited my doctor for an annual checkup that included full blood work and bone density measurements. It was a painless experience, even considering the wait for the results of the blood work. I eased back into my daily routine. Then I received the follow-up call from my doctor with the results. Her voice was calm and her tone upbeat as she suggested that I see a specialist to check my thyroid. Apparently, my thyroid levels were high; I appeared to be hyperthyroid. Not exactly good news, but not the end of the world either.
Searching for a specialist
So I set out on the journey of finding an endocrinologist. I called all three doctors who were recommended to me, but eventually decided on one at Cornell Medical Center, based on my insurance and their availability. Although the center has a good reputation, I realized that, more than the latest technology or most convenient location, the doctor is truly what defines the patient experience. At our first meeting, my doctor was confident but condescending. In fact, he had the worst bedside manner I've ever experienced. His lack of empathy for his patient’s fear of the unknown was evidence that his clinical expertise was completely detached from his human understanding. The cold and clinical environment was almost as scary as being diagnosed with the disease. Not only that, but my visit was rushed, and I left his office feeling like a number.
After that initial visit, the doctor ordered more extensive blood work, and I readily complied. I waited patiently almost as if there was nothing wrong with me, enjoying my newly trim body (a result of my recently diagnosed condition). A few weeks later, I decided to call his office to follow up on the results of my blood work. No one answered. The next time I heard from his office was through the U.S. postal service; rather than return my call, he mailed me a letter containing the results of my lab work and a diagnosis of Graves' disease. Graves' disease is the result of problems in the immune system that lead to increased thyroid activity. When I received the letter containing my diagnosis, I was completely unprepared for the emotional impact of this cold and clinical interaction.
Treating a person, not a condition
I’m not sure if it’s my family background of doctors or my lack of experience in the role of a patient, but I was appalled by the way I was treated. All I could think of were the millions of people who don’t understand the system the way I do, all of the people who don’t have the same financial and social support that I have. I knew that, for myself, my treatment journey was not going to be dictated by one doctor’s poor response. Just as the diagnosis of Graves' disease does not define me as a person, this doctor’s bedside manner would not define me as a patient.
Thank goodness for Google
After being robbed of the respect of a human interaction when learning of this very serious and very personal news, I was empowered immediately to seek information and potential treatment options on my own. The ability that the Web and various search tools have offered is amazing. Fifteen years ago, I would have been stuck in a black hole waiting for doctors to diagnose me; I would have depended solely on them to investigate my treatment options.
Education is at the core of moving forward
Today, I can self-educate via many Web-based educational platforms such as Mayoclinic.com, webmd.com, endocrineweb.com, livestrong.com and many other sites whose main charge is to help inform and guide a patient’s health treatment journey. After diving into research on Graves' disease and thyroid conditions, I gained a new sense of confidence in dealing with the journey ahead. It also gave me a series of questions to ask my doctor during my second visit (in which I was given three minutes for questions).
The Graves' community online presence is, well, grave
Although the Internet provided me with an abundance of information, I was underwhelmed by the online communities for Graves' patients. I also found that while there were some smaller communities, there just wasn’t enough of the right kind of forums for these patients. There seems to be an unmet need that I hope someday to help fill.
So far, my experience has instilled an even stronger sense in me of just how important patient empowerment is in health and wellness. Just remember that you are the patient: you have certain rights as a human being, and this is particularly important when it comes to your healthcare. You have the right to be treated decently and honestly and the right to make educated decisions to ensure that your health outcomes are as positive as possible.