Takeaway
My experience with melanoma and subsequent autoimmune illness is a stark reminder for us all to validate patients’ experiences. This can help us avoid dismissing patient concerns.
Lifelong learning in clinical excellence | March 31, 2026 | 4 min read
By David Kopacz, MD, Clinical Tele-Psychiatry Practice
I’ve been free of cancer for three and a half years. I had surgery for stage IIIa melanoma, which removed any detectable cancer. My oncologist recommended a year of immunotherapy to eliminate any undetected cancer and to prevent recurrence. However, I was only able to take three months of immunotherapy before I developed a rapid onset of ascending nerve and muscle symptoms, and I was off work for three months. For the past three years, I’ve been living with chronic autoimmune symptoms.
The medical system seems to have cured me of cancer, but it also caused chronic illness. Iatrogenic—from the Greek, iatros (“healer, physician”) and gen-ic (“producing, pertaining to generation”). Medicine can both cure and harm. We’re told to first do no harm, but the very tools we use to cure can also wound. We would do well to remember that the words for medicine and poison have the same Greek root of pharmakonm (Girard, “Violence and the Sacred,” page 95). In this way, the illnesses we treat and the illness we cause are teachers to the clinician.
The medical system (and the healthcare professionals who comprise that system) has both healed and wounded me. I’ve lived with my chronic and confusing symptoms that started after immunotherapy largely on my own. I’ve been blamed, belittled, and marginalized by the attitudes of some doctors to my illness. It’s been an education for me, to see how the human beings working in the medical system have been dehumanized and how they’ve dehumanized me. I’ve been let down by those who were meant to care for me.
Largely left to my own devices, I’ve struggled with my illness. I turned to writers who have written illness memoirs. Arthur Frank’s writing has been very helpful. I’ve also turned to writing myself—a project I call “Lost in the Wilderness of the Body.”
When I first was diagnosed with cancer, my mentor, Joseph Rael (Beautiful Painted Arrow), asked me if I knew why I developed cancer. I quickly went through a mental review that gravitated toward things I’d done wrong—Joseph interrupted my stammering and interjected: “It’s because you’re still in training!” Joseph, himself, had gone through melanoma treatment and immunotherapy, but he was speaking in more of a metaphorical or spiritual sense that illness itself could be my teacher. My first reaction to his statement was, “In training for what?!?!?” I now know that he meant my training as a healer and my training to become a fully human being.
We all get sick—and as clinicians we treat illness and we also sometimes cause illness. We can all use illness as our teacher to become better healers and humans. I view many of the failings of doctors and the medical system as stemming from professionals having only an identity as technicians and not as healers. Technicians follow protocols, but healers connect with humanity—their own as well as that of the patient. A technician’s job can be completed, but a healer’s work is never done—there’s always more to learn—for ourselves and for patients.
How can we use illness as a teacher?
As we are all humans, these ideas can apply to us and to patients.
1. Cultivate an attitude of gratitude, acceptance, and respect for illness through mindfulness, reflection, writing, and dialogue with supportive people
2. There’s a community of people, both within and outside of the medical system, who are studying at the University of Illness, and who can share their struggles and hard-earned wisdom if you tell people you’re sick—but remember that most of society and part of the medical system won’t be supportive of your experience and won’t see you as a whole, but as a wounded, human being.
3. Remember the limits of medicine to cure and that it can also harm.
4. Be mindful of the forces of dehumanization in the medical system and the world—use illness as a teacher who reminds us of our capacity to experience vulnerability and compassion.
5. Remember to care for ourselves as we’re caring for others, and that clinicians and patients both can enter into practices of self/other caring.
6. I wrote a book, “Caring for Self & Others: Transforming Burnout, Compassion Fatigue, and Soul Loss,” to help me, and hopefully others, develop practices of caring and practices of learning from illness.
I use my illness as a teacher to enhance my compassion for patients. I know, from personal experience, what it’s like to be a patient. I also use my own story as a way of validating the challenges of living with chronic illness. I selectively share parts of my own experience to show patients that they aren’t alone, that it’s difficult navigating the health delivery system, and to share the burden of being ill. I’ve found that there’s a brotherhood and sisterhood of cancer, autoimmune disease, and chronic illness. Susan Sontag wrote in “Illness as a Metaphor” that “Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick.” Those who have had to use this passport and travel in the “kingdom of the sick” recognize each other and can share tales and travails of their journeys. It’s a journey made less alone by sharing it with others.
This piece expresses the views solely of the author. It does not necessarily represent the views of any organization, including Johns Hopkins Medicine.