Researcher, Heal Thyself?

“You see doctor, when I found out you had Marfan syndrome and I saw that you were pregnant, I felt so jealous I could not stand it. Then I realized, if you did it, maybe I could, too.” My mind raced with ways to respond. I did not answer as quickly as usual. She took my pause as an opportunity to continue... “You know, I love my foster babies. I feel so blessed. It’s just hard to wake up every morning and remember that they can be taken away. I have three now...they are siblings. Their mother is addicted to drugs. But I think she is pregnant again, so I might be able to have four children.” My patient looked into my eyes intently. I continued to listen. “You give me so much hope. I thought I would die if I tried to have a baby, so my husband got a vasectomy. But if it is possible for me to carry a baby, he will try to have it reversed. Please doctor, tell me the truth. Is it safe for me to have a baby?” I usually do not disclose my diagnosis to my patients. I have always felt that my role as a physician is to ease THEIR suffering, not mine. I learned very early in my training that patient visits should not be mutual therapy sessions. When I enter my patient’s room, I try to suspend all of my personal thoughts, fears, and concerns. The encounter is about the patient, not about me. I do believe that my personal experiences living with Marfan syndrome (a connective tissue disorder that primarily affects the eyes and heart) enable me to be a more effective physician, both to patients with and without Marfan syndrome. It is true: I have been through open heart surgery; I have experienced the daily fatigue; I have received letter after letter informing me that my application for disability insurance has been denied. I also remember the burning desire to give birth to a child and the fear that it would never be possible... When I was five years old, my parents took me to a pediatric surgeon to be evaluated for repair of my pectus excavatum. A tall, bald man with a wide grin walked into the examination room. He spoke with my parents for a while, then he sat down on a stool and looked me in the eyes. The surgeon then asked “Mary, do you have any questions about the surgery?” “Yes,” I replied. “If I have this surgery, will it be easier for me to have children when I am older?” Shocked, the surgeon looked incredulously at my parents and then stared back at me. “I have never heard that question from a five year old before. But, yes. I think that it might.” Elated, I had heard all I needed to know. “Ok,” I declared. “I’ll have the surgery.” During college, my most trusted mentor told me that she did not think I should go through childbirth. I became withdrawn. I stopped going to parties. I did not want to date anymore. I thought that no one would ever want to marry me. Many years later, I learned that I had been wrong. I realized that I could be happy even if I did not have children. Then, I found that at least one person was willing to marry me, even if we did not have biologic children. A year after marriage, I ecstatically learned that I was pregnant. My husband and I had discussed the risks and benefits of this choice extensively. We knew this was a high-risk pregnancy. I was monitored very closely by my medical team. Fortunately, my child and I made it through delivery safely. All these thoughts ran through my mind in the seconds that I debated how to respond to my patient’s question. She knew I had Marfan syndrome because the second my 6ʹ2′′ frame entered her exam room, she had asked me if I had Marfan syndrome. Unlike other medical conditions, Marfan syndrome has a distinctive phenotype. A physician with diabetes may not have any overt signs that suggest their diagnosis to a patient. However, I cannot easily “hide” my diagnosis. Although I do not usually disclose that I have Marfan syndrome to my patients, my patients often ask me directly. I have never had a good poker face. Researcher, Heal Thyself?