A doctor struggles to keep his colleagues and patients from knowing about his disease

By Paul Konowitz, M.D., Medical Director of HealthAngle

This is the third installment in a series about Paul Konowitz’s personal and professional struggles as a surgeon with a life-threatening disease.

It was becoming very clear to me that my battle with pemphigus, an incurable, blistering autoimmune disease that can affect any mucosal surface, was going to be more like the Hundred Years War than the Six Day War. I realized I would need to dig deep into my inner source of strength to get better. The clinical manifestation of my disease was mainly limited to painful open sores in my mouth. This resulted in multiple areas where the protective lining of the mouth was completely gone, exposing the inner lining to “irritants” such as food.. Still, except for the weight loss, few people could tell I was sick.

The impact of the high doses of steroids on my sleep cycle resulted in insomnia and chronic fatigue that, combined with the additional side effect of increased irritability, created an inner demon. But I felt I was fairly successful at keeping this part of me contained at work (though not necessarily so successful at home). My OR scrubs, which any nurse will tell you is one of the least flattering outfits ever created, now fit my suddenly thinner physique. Initially, nurses and other physicians would ask about it, noticing my somewhat emaciated appearance: “Is everything okay?”

I lied, saying, “Everything is fine.” They then asked, “Are you on a diet?” Yes, I thought, I’m on the “white diet”—nothing solid, crunchy, spicy, or hot.

Over the years, I had seen other physicians abruptly take on this same gaunt appearance on their gradual and downward spirals in their struggles with end-stage cancer, until they suddenly disappeared completely from the OR schedule and then from this world. Even at their wakes, lying so still and silent in their coffins with everything about them gone except for their outer shells, their burial clothes still hung limply from their lifeless bodies. More and more, this was the image I had of myself.

Lusting for pizza

My struggle was to eat and drink to not only remain alive but also to have the nutritional armamentarium to fight my illness. Ordinary food remained out of the question, and I had to keep repeating the mantra that was given to me by the nurse in my dermatologist’s office: “bland, boring, and soft,” “bland, boring, and soft,” “bland, boring, and soft.”

For me, eating had always been an act of joy, and I was very good at it. When my relatives planned holiday meals they always counted me as “two” when calculating the amount of food needed. I was known in my family as the king of leftovers, with an unbelievable ability to consume great quantities of my favorite foods. Pizza was number one on my list; I could polish it off with gusto like no one else, seven days a week. I knew the pizza delivery number by heart, and I even still knew the pizza delivery number from when I lived in Manhattan twenty years ago. Now pizza was out of the question, and it appeared that I would never be able to eat it again. At this point in my illness, in a moment of desperation, I tried to strike a deal with God or with whatever other ethereal power was listening to my innermost thoughts: I would be happy to never eat pizza again if only my mouth would heal and I could eat the most basic foods.

Not since elementary school had I carried a lunch bag with a thermos. Suddenly, I was preparing my food every morning before going to the office to see patients, throwing a few pieces of sliced turkey, a vanilla yogurt, and some plain pasta into a couple of Tupperware containers. I would eat alone in my office with the door closed, choosing to hide the daily struggle I had even with those simple and soft foods. On my days in the operating room, I would peruse the food in the hospital cafeteria with only one goal — not necessarily to find something enjoyable or satisfying, but to find something that my mouth could actually tolerate. I would pass by the salad bar, the sandwich station, the hot lunches, and certainly the chips and candy rack, shaking my head and thinking, no, no, no and no. Often, there was literally nothing that I could possibly eat. Sometimes I was lucky enough to find plain soup, but often it to was too hot to consume in the limited time available in between my surgical cases. My mouth was already raw, as if I had swallowed scalding water, so more heat was to be avoided. With the OR nurse calling me on the intercom to tell me that my patient was asleep and that they were waiting for me to start the surgery, that hot bowl of soup often ended up in the trash and I often ended up with an empty stomach. A hungry surgeon is an irritable surgeon, and over time, this was beginning to show.

Then there were those cans of Boost and Ensure, those chalky nutritional supplements that I had thought were reserved for the elderly, the infirm, and my cancer patients who couldn’t eat because of some indignity that I performed on them in the hopes of curing their disease. I snuck sips of these when no one was looking. On many occasions, I would hide in the locker room of the operating room and surreptitiously drink several cans that I had buried in my briefcase. My paranoia and level of avoidance were such that like a criminal trying to hide evidence, I would cover these empty cans with other garbage after putting them in the trash. I felt like the stereotypical alcoholic sneaking a drink when no one was looking, in my case drinking out of a can rather than out of a flask. In my mind, I was expert at covering my tracks, but I was only deceiving myself even further. The mental strain of this behavior began to take its toll as I became more and more isolated from those around me.

I kept thinking that I could continue to function at my prediagnosis capacity and keep “my little secret” — my illness — from colleagues and patients. I was ashamed at being sick. How could this happen to me? What had I done to let this happen to me? I was hiding from the truth and purposely trying to avoid eliciting sympathy from others. I just wanted to be left alone and to be allowed to continue my professional routine without interference. As the disease blossomed and my symptoms grew, I was finally left too sick to care anymore about who knew about my condition. Soon I would be the subject of operating-room gossip, but I would be too sick, and no longer there, to hear about it. I, too, would suddenly vanish from that world of nurses, surgeons, and patients.

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