You’re a newly qualified psychiatrist working on an AIDS unit in a hospital. You’re HIV-positive, but you’ve kept your diagnosis a secret.
You’re in a meeting with other clinicians when a doctor refers to patients on the unit as SHPOS: “subhuman pieces of shit.”
You remain silent.
It’s a few years before you can openly state: “I am one of them.”
You do it in a presentation called The HIV-Infected Psychiatrist: Clinical Issues at an American Psychiatric Association conference.
This is the story Dr. Paul Browde, assistant clinical professor at the New York University, told at an International Network of Narrative Medicine conference in London, UK last month.
As a medical student in South Africa, Dr. Browde said he was trained to think of doctors as invulnerable. "Professional knowledge is the filter through which they listen to patients and their problems," he said.
On the other hand, illness carries the stigma of weakness.
“Until my own diagnosis, I viewed illness as something that happened to others,” Dr. Browde said. “When I suddenly had this diagnosis and was privy to the way in which doctors spoke about AIDS patients and people with HIV, I had the privileged position of hearing what actually got spoken behind closed doors. This was appalling to me, and at the same time, taught me about the importance of opening those closed doors.”
He later made it a practice in his workplace to share his patient story with medical colleagues. “I did this to educate but also to protect myself from having to endure being spoken about while in the room,” he said. “As the director of a clinic, and as a psychiatrist in a counselling centre, I brought all the staff together and told my story. This was always received openly and with gratitude, and allowed me to feel that I was not living in secret.”
Dr. Browde said it was his narrative therapy training that led him to see the clinical value of understanding “what it means to be a patient and to face death at an early age.
“You could call this empathy,” he said. “The ability to imagine being in the shoes of someone else. This is a tool that I can use in my work with people, particularly as a psychiatrist, where the… self is the instrument used for treatment (aided by medication at times)!”
While his story is a public one, he doesn't share it indiscriminately.
“The question I always ask myself is 'Why? Why am I doing this? Is it for me? Or is it for the patient?' The answer can be a subtle distinction, but always puts the patient at the centre of my thinking,” he said.
“For some patients, it's been very important for me to disclose my being gay, or HIV positive, or the fact that I am in a long-term committed relationship, or that I have experienced panic attacks. There are others for whom the information would be a burden, placing on them the need to take care of me, and in those cases I have chosen to hold the information myself.”
Dr. Browde distinguished between secrecy and privacy. “Secrecy is toxic. If I'm living with a secret, there's something that the patient could find out that would cause a serious problem for the relationship or for me. Privacy means that I have chosen not to talk about it but if found out, the relationship could hold the news.”
Dr. Browde shared three principles of storytelling at the narrative medicine conference.
First, “Everyone has a story,” he said, noting that “people who are marginalized often feel they don’t have a story.”
Second, there are many stories in every life.
And third, “a good life is one richly described.” This means a good life is one about which many stories can be told.
“There are people whose lives are reduced to one story, or a few habitual ways of describing their lives,” he said. “I saw this particularly in people with intellectual disabilities who are reduced to the story of a diagnosis or of being disabled.”
While filming adults with intellectual disabilities who had recently been de-institutionalized in Croatia, Dr. Browde said he discovered multiple stories: “being a daughter; a brother; someone who loves to walk in the park and smell the flowers; an aunt who loves feeding her niece ice cream; and a person who notices how others cross [to the other side] of the road when she approaches.
“So it’s not about stories having a positive spin, but rather about excavating for many different stories to describe someone’s life, which makes the life richly-described, and that is a full life.”
Dr. Browde said “stories are actions” and personal storytelling can be a form of advocacy.
Dr. Browde is co-founder of Narativ Inc., a company based in New York and London. Narativ trains corporate teams, non-profits and people in the art of listening to and telling stories as a way to improve communication.