Building a Good Healthcare Team With Lupus
Last updated: March 2023
Know thyself. In 2004, I secured a law clerk position with a judge in Fulton County, Georgia. I certainly felt blessed because it is a competitive and prestigious position. During my mandatory county physical, the doctor noticed my hypertension and swelling in my legs. He urged me to see a rheumatologist and nephrologist.
Once the county activated my medical insurance, my primary physician referred me to a rheumatologist. At the time, I did not know what characteristics to look for in a doctor. I didn’t really concentrate on the function of the office, the demeanor of the doctor, the ease of access, and the proximity of the office to other resources. Most importantly, I did not know myself. I instead relied on the expertise of my primary care physician and the hope that I would have a good rapport with this rheumatologist.
Pros and cons of my rheumatologist
I knew I would like this rheumatologist before my first appointment. He looked like the younger brother of one of my previous rheumatologists. I’ve even transposed their names in the last few years; sometimes in front of their face. My 2004 rheumatologist was an alumni of Tulane University like me. He was very smart and wore his loftiness on his sleeve, “just like his older brother. He had the ability to connect me with the best specialists in the metro Atlanta area.
I also liked the way he ran his office. He ran his practice like a factory. He was always on time; he did not really believe in too much small talk. We rarely looked eye to eye. He focused on typing information into his computer instead of focusing on the human being directly next to him. He understood my need to get back to the courthouse so he got me in and out of his office. Having a doctor who understood my other obligations and knew how to streamline appointments was great for a while.
My doctor did not listen
I accepted the poor bedside manner for 14 years because my career was my focus and my lupus was in remission. I had very little time to focus on my doctor’s appointments; I swam to reduce the pain produced as a result of Fibromyalgia. I tried to eat right. As long as my lab work looked normal, my rheumatologist ignored the heat flashes, night sweats, shortness of breath, dizziness, lightheadedness, and joint pain. He trumped them up to complications that come with having multiple autoimmune conditions. He rarely suggested treatment if my lab work didn't indicate that I needed treatment according to his standard. He didn't listen to my position. I really didn’t understand that I had the right to really advocate for myself and even the ability to fire my doctor. I was a number to him and even though he was a good doctor, he did not recognize that he should look at me as a whole person.
Lessons on doctor and patient relationships
Fourteen years later I learned that I no longer needed the services of this rheumatologist. I learned that my health should come first. If my doctor did not consider my health first, through his actions, through his examination, and through his ability to understand me outside of my illness, then the relationship wouldn't work. I compared my current rheumatologist to this rheumatologist and my nephrologist of 17 years I realized that I didn't need the characteristics in the last paragraph, I need a doctor who cared. My current rheumatologist and nephrologist give me advice, they want me to succeed, they cherish my wins, and comfort me during a loss.
Now that I know some of the important things about myself and what I want, I have the perfect healthcare team. Over the next few articles, I will give you some pointers on how to establish a good doctor-patient relationship. I will talk a little more about knowing and understanding your needs as a patient. I will provide resources. I will talk about advocacy. I will share some of my strategies and I will tell you what characteristics have benefited me the most.
Have there been things you have learned along your lupus journey that you wish had been explained to you by a healthcare provider earlier?