Being a newcomer to rheumatologic illness does not mean I am inexperienced. In my professional life, I am a primary care physician, board-certified in internal medicine, and working on becoming board-certified in obesity medicine. This was all I ever wanted to do. From the time I was 3 years old, I would pretend my stuffed animals were ill, and after examining them with a toy stethoscope while wearing sunglasses with their plastic lenses removed (to appear intelligent), I could be overheard diagnosing them with ear infections or pneumonia, telling them they needed antibiotics to get well. No doubt this was something I had heard in exam rooms myself, as a child with allergies and recurrent ear infections that would sometimes develop into bronchitis or even- you guessed it- pneumonia.
Very precocious and opinionated at an early age, it was sometime later in my imaginary career, perhaps when I was 4 or 5, I posed, hand on hip, and told my mom I worked in a weight-loss clinic. Maybe this was from a commercial or something I had heard on television, but I hope she did not take it personally. When I was a teenager, I took an evening medical terminology course at the vo-tech school with adults who gave me funny looks, and often I could be heard asking my friends details and/or offering advice about their cold symptoms or other physical ailments.
These early experiences shaped the kind of physician I would one day become, one who has been a patient many times, with diagnoses ranging from allergies to thyroid cancer, and having had 14 surgeries for various and sundry conditions, most recently to repair a torn ACL from a skiing accident. On the one hand, I know that I have had pretty good health despite everything, and on the other, my brushes with being a patient have made me a better doctor. My patients appreciate that I have both compassion and empathy, though they may not always realize these are, in part, born from the perspective of being on the other side of the exam room.
So when I developed arthritis last fall, I felt rather more prepared than I knew many patients were, knowing that today there are more therapies available than ever before, and that we now have the ability to replace joints in fingers, fuse wrists that have deteriorated, and to wear ring splints to stave off deformities of the fingers commonly seen in RA.
Ironically, during medical school, I had completed a summer rheumatology preceptorship (an area of more in-depth study working directly under an expert in the field), and I had the opportunity to learn about living with the disease directly from the patient-instructors who volunteered to help us learn how to complete a thorough yet gentle exam on someone with RA. I was certain I knew exactly what to expect, so much so, I saw it as both a blessing and a curse, because I knew exactly what to expect(!) and how this would affect my functional ability. What I did not bargain for were the social and emotional consequences of staring down the gullet of a beastly systemic disease that has the ability to render strong individuals weak and disrupt everything in its wake.
Most people have busy, complex lives, multiple roles they play within them, people to care for and whom rely on them, social structures of which they are a part, personal interests outside of their vocations. As most of us are endowed with fairly good health, we navigate life’s complexity without much trouble. My life is no different, other than as a healthcare provider, I have more people who rely on me being functional than does the average person. Until RA, I took for granted how easily I could complete my various activities. Some of the ways I began to struggle–
** at work: caring for patients with ongoing compassion and empathy although I did not feel well, in addition to all that a medical practice entails– approving refills, taking calls during the day and after hours, completing documentation, supervising my staff and instructing students– as well as serving on committees out of a sense of duty and support for my organization and in keeping with my interests;
** at home: as the “head” of domestic duties, including laundry, shopping, cooking, and in having the energy and endurance to care for my 3 children, my husband, and our dog who would shortly thereafter develop a recurrence of lymphoma and require increased care before ultimately succumbing;
** at leisure: playing piano as an emotional outlet and for my church, reading as an escape and as part of my book club, maintaining a social life with mothers in the neighborhood for sisterhood and my own sanity!
What I did not anticipate was going through all the stages of grief over this disease, at first being in denial that I needed to slow down, anger- which was fleeting, because no one was to blame, bargaining with myself that I could hold on if I just made a few slight accommodations, depression- an ongoing struggle but better, then mourning my “old life” when I finally accepted I couldn’t do it all at the same pace and also get the rest I needed to fight the extreme fatigue I had no words for other than the feeling that each of my limbs weighed 50 lbs. It’s a work-in-progress, since the disease is not yet controlled, it’s still crashing through my life, and I am still picking up the broken bits and coping with it on every level.
I would add that I was never one to second-guess my own decisions, as each led me to a place that only served to further my growth and push me closer to my dreams and desires, and I’d only ever been confidently decisive. But the self-doubt that has planted a seed, the thinking that perhaps this is all in my head as most of my labs are normal (thus leading to diagnosis of seronegative RA), my exam minimally impressive for synovitis when I have seen my rheumatologist, and even imaging failed to show signs of RA, has made me wonder if I will ever get to that treatment sweet-spot, when my disease is controlled, I can resume an active life, and say with confidence that I know what I’m about again. When you know, you just know.
Perhaps the technology is less advanced than my diagnostic acumen attuned to my own body, a powerful clinical target for my brainwaves to be trained onto. However, by history and presentation the rheumatologist believes something is there, so if I have to keep undergoing tests until it can be “proven” in order to justify stepping up my therapy, that is what I will do.
Jennifer Scheid, MD