I was born a healthy baby girl in August, 1950, to two college-educated parents living in NYC. In February, 1954, the first symptom my parents noticed was that I began holding onto the walls as I walked, probably to maintain my balance. Then I reverted to crawling up and down stairs. For the next three years, I was taken to multiple doctors and hospitals in NYC, but none was able to diagnose my problem. Some thought I had a developmental disability, so I had IQ tests as a pre-schooler. They revealed I was a very bright child. Some thought I had neurological problems and did spinal taps without anesthesia, because of that era’s myth that young children did not feel pain. They sent my parents home, but had 4 adults hold each of my limbs down, while I screamed in pain, feeling alone and tortured. The searing pain of these early tests made me fearful of all forms of physical touch and medical penetration. It was clear the doctors had no idea if my problem involved my brain, nerves, muscles, bones, or joints, yet in that era of paternalistic medicine, they radiated unquestionable power and authority. I felt angry and insulted that they treated me as if I were nothing but a collection of physical defects, rather than the bright, shy, sensitive little girl I actually was. I was a cheerful child who ignored her symptoms and found the diagnostic process to be worse than the disease itself, whatever it was. The disease progressed: my right wrist began to turn out awkwardly and stiffen, and the finger joints on the same hand contracted. 

On the recommendation of my pediatrician, my mother and I flew to the Mayo Clinic in Rochester, MN in January, 1957, to obtain a diagnosis and treatment plan. I was hospitalized there for three weeks. At the end of my hospitalization, a doctor took me, again alone, into an exam room and said three sentences I’ll never forget: “You have rheumatoid arthritis. It is a very serious illness. It could completely cripple you.” With that, he walked out of the room, and I never saw him again. My mind began reeling in shock, because I felt perfectly well. What did “completely cripple” mean? Did it mean I was going to suddenly become bedridden, and stay that way for the rest of my life? I pictured myself as a bedridden adult in a rat- and roach-infested 10th floor tenement, slowly starving to death, because I would be unable to work and have no money for food. A six-year-old knows that food and shelter cost money, but has no idea there is a social safety net to enable survival. Was there any way I could avoid becoming “completely crippled”? I had no idea, nor how soon this might happen. I could not discuss my fears with my parents, because the norm in my family was not to discuss feelings. To this day, I cannot understand why a doctor would make this abrupt, pessimistic statement to a young child and not give her a chance to ask a single question. Was he trying to scare me into compliance with his treatment plan? Clearly, he lacked emotional sensitivity. Did he not think this disastrous information would make me frightened, worried, confused, and depressed? I felt crushed, like he had said, “You have no future.” 

When we got home, my parents implemented the doctors’ treatment plan: a hot bath every morning, 18 aspirins per day, including 2 at 2AM, a daily leg massage given by my mother, nightly stretching exercises with my father, and a month of bed rest, which kept me away from school even longer. Today, we know that inactivity just makes arthritis symptoms worse. Many years later, I found out from my mother that she had been told, at the end of my hospitalization, that I might have lupus, and might not survive childhood. So, she and my father secluded themselves in their bedroom at night, discussing whether or not to have another child, in the event of my death. Thankfully, my parents had the good sense not to tell me that my survival was in question. (The lupus hypothesis was ruled out a year later with the advent of a blood test which differentiated RA from lupus.) The emotional consequence of this very stressful situation was that my parents were not emotionally available to comfort or reassure my older brother or myself. I felt abandoned, alone, and depressed until that summer. 

But even in first grade, I saw that I understood new ideas faster than most of my classmates. My intelligence was one of my strengths. Secondly, my disease did not appear to be progressing. I was still walking, riding my two-wheeler, and playing hopscotch and jump rope, like all the little girls I knew. If this disease was going to “completely cripple me,” it didn’t appear to be anytime soon. I thought of a metaphor for my illness: It was like a robber who’d broken into my home, demanding my valuables. Would I passively hand them over, fight, or flee? I began to see this unwelcome disease as an intruder into my body, to whom I’d never surrender my valuable future. I saw myself as a fighter, and, so far, I was winning! I felt empowered by this new image of myself as a fighter, rather than a victim, and I transformed myself from a shy, sensitive 6-year old into a spunky, determined one. I was determined to make my one-and-only life as rewarding as possible. I was also angry at the demeaning, “collection of defects” view the doctors apparently held of me. I wanted to become exceptional in a positive way. So I channeled my anger into my strength, my intellectual ability. I’ll show these doctors who doubted my intelligence and worth, I thought angrily! I’ll become a star student! I’ll have an amazing future! Negative expectations became positive motivation. Eleven years later, I graduated first in my class from a public high school on Long Island. As a child, I experienced some ridicule and rejection from my peers because of my disability, but it was hard to make fun of the young woman giving the valedictory address. I also earned a Regents scholarship, and four years later graduated magna cum laude from the University of Rochester, after having spent a junior year abroad in Paris and traveling all over Western Europe. At no point since that doctor’s prediction sixty-seven years ago have I become “completely crippled,” Thanks to the progress in orthopedic surgery, my dozen operations in adulthood have maintained my mobility. I caution doctors today never to leave a young child hopeless and alone in emotional misery. 

After college and several years working as a teacher and employment counselor, I returned to school to get a PhD in counseling psychology. I became a licensed psychologist, an expert at emotional expression and healing. Late in my career, I worked with 2 women doctors who readily admitted their imperfections, and working with them was healing for me as well. In an amazing role reversal, I had the experience of healing those in the profession which was supposed to heal me. I admired these women’s emotional vulnerability and unwillingness to pretend omniscience. We related to each other as equal human beings. They obviously respected me and expressed gratitude for the wisdom I shared with them, and I felt I had come full circle, healing physicians, those beings who once acted so superior to me, while at the same time causing me and my family unnecessary emotional misery. As I often told my clients, superiority is a fiction perpetrated by the insecure. My healing has also been assisted by the humanity of my orthopedic surgeon, Dr. Perry Greene (of William Beaumont Hospital in Royal Oak, MI), who treated me like a valuable human being, rather than a collection of physical defects. When I flew into Detroit the day before a surgery with him, he was kind enough to drive me from his office to my hotel, carry my suitcase into the hotel, and treat me to a milkshake to settle my nervous stomach. 

Many physicians could greatly enhance their effectiveness as healers by learning the basics of emotional communication, expressing empathy and compassion, and working to create a supportive culture in their profession, so they too could enjoy a psychologically healthy work environment and be more emotionally supportive to their patients. I wish my Mayo Clinic doctor had said to me, “You seem like a smart, optimistic child. These strengths should be very helpful in dealing with your rheumatoid arthritis. It will make your joints stiff and hard to move. This disease can be severe or mild, or even become inactive. And there’s good news from researchers: They’re now testing artificial joints in animals, and by the time you need one, they’ll probably be available for you, too. You’ll need to take care of your joints with medications, exercises, and heat, but if you do so, I’m confident you’ll be able to live a rewarding life.” Young children need reassurance, not fear tactics, especially when their disease is unlikely to be terminal.

Far from having no future, I now look back on a life of service to others, travel to 18 foreign countries, and deeply rewarding scholarship, writing, and disability rights activism. Far from being “completely crippled,” I can still walk 3.5 miles in an hour on a treadmill, cycle, whip up a gourmet meal, and swim laps for hours. I did 520 miles of lap swimming in an indoor pool during the first 1.5 years of the pandemic, and 365 miles in a year to regain my strength and coordination after 2 knee replacement surgeries. One of my clients, a physical therapist, once said to me in amazement, “You teach emotional gymnastics!” She meant that I taught her to look at her life’s events from many different angles. (As someone who could never complete a back flip on a balance beam, I was delighted by her comment!) Now I see I have also benefited psychologically from my illness and life history. They’ve strengthened my flexibility, creativity, empathy, helpfulness, determination, wisdom, optimism, and sense of purpose. In retirement, I now teach communication skills to medical students. I am immensely grateful for how positively my life has turned out – despite unbelievably low medical expectations! And I believe doctors need to become just as adept at detecting and naming their patients’ psychological strengths as they are at detecting and naming their disease-causing micro-organisms.