I was always told by physicians who mentored me to never get too close to my patients. Never accept gifts from them. Never discuss anything about your personal life with them. Never cry or lose control of your emotions in front of them.
Never. Never. Never.
During my years as an impressionable medical student and internal medicine resident during the late 1990s, I always thought this was strange advice. How would sick and vulnerable people entrusting me with their care ever feel comfortable doing so if they didn't know anything about me? If they couldn't express thanks to me in the ways their cultures dictated? If they never witnessed me display any emotion during our clinical encounters?
In response to what I construed as bad advice, I did the exact opposite of what I was instructed, like a petulant child ignoring the guidance of their parents. I accepted the pharmacy-bought twenty-five dollar watch from an elder Dominican grandmother with heart failure who presented it to me as a Christmas present. I lost my temper with a 29-year-old black American patient who accused me of "not doing enough for her" to address her physical symptoms, despite ample evidence to the contrary. Our in-clinic shouting match got me scolded by my attending supervisor but led to her tearful disclosure of her bipolar diagnosis that was at the root of her somatic complaints. I've hugged and cried with countless patients, sharing stories and anecdotes with them as if we were long lost relatives.
None of my patients have ever sucked their teeth in disgust, rolled their eyes in dissatisfaction, or asked the front desk staff to reassign them with another health care provider due to perceptions of my personal approach being "unprofessional." Not one.
What I Learned About Disclosure When I Met Jacob
Fast forward to 2019. I've been a practicing physician for many years now. I'm a good deal older. Somewhat wiser. No doubt I've been through a lot professionally and personally that has made me a better medical doctor than the rebellious resident I was back then. I've also learned that ignoring my mentors' warning against getting close to my patients was not just me bucking against authority, but a more humanistic way to approach patient care.
A nurse called me to see a patient in the college health clinic where I work. His chief complaint was "needs HIV medication refill." Passing the triage room, I glanced in and saw an unassuming young man sitting with the nurse, getting his vitals. Something told me to walk in and introduce myself. I did, and he lit up with a dazzling smile as I shook his hand.
His name was Jacob.
The nurse got his vitals and brought him into the exam room. I sat in front of this 21-year-old person, born just before medical mentors started giving me bad advice, and listened intently as he unraveled his story at my feet.
Jacob was a junior in college, born and raised in the South. He was diagnosed with HIV as a freshman during a visit for a routine, on-campus testing initiative. The organization conducting the testing referred him to a white gay boutique clinic in town, known more for cosmetic Botox, fillers, and recreational testosterone than practicing real medicine. They drew his labs and started him on antiretroviral therapy. He did fine until his return visit, when the clinic informed him they would not see him until he paid an outstanding $400 lab bill from his initial visit, despite being enrolled in the school's health insurance plan.
Jacob did what many patients do when facing similar circumstances -- he didn't follow up. He ran out of meds. Now he sat conversing with me, off his medications for three months. When he came to start the fall semester, he thought he would try to see what could be done at the student health clinic.
My heart sank. Versions of his story from black same-gender-loving men are neither uncommon nor unfamiliar to me. I proceeded to go through all the machinations a good physician does when seeing a new patient with HIV. I took an appropriate history, including family history, sexually transmitted infection (STI) history, and his mental health. I inquired about his sexual history. How many sexual partners has he had in the past three months? Top, bottom, or versatile? How often does he use condoms? How does he disclose his HIV status to his sexual partners? He answered all of them with candor and without apology.
I performed a thorough head-to-toe physical exam. Listened to his lungs, heart, and abdomen. Inspected oropharynx, ears, and skin. Examined his genitals and swabbed every orifice we are taught to when doing STI screening. Through all this I approached him with kindness, respect, and compassion. But he was struggling. I could tell. He needed something more than what I was providing.
That's when I did it. As a fellow black same-gender-loving man, I knew it was the right thing to do.
I told Jacob I was living with HIV as well.
I surprised myself with how casually I blurted it out, like letting a balloon out of my hand and watching it float aimlessly into a clear blue sky. I told him that I started working in the HIV field when I was HIV negative. How I treated hundreds of patients living with HIV and conducted research with thousands of men on the topic. How people assumed I was living with HIV because I worked in the field. How I even wrote a narrative about a problematic HIV-testing experience I had that was published in a respected medical journal.
I told him all this, and how all this changed in 2007 when I was diagnosed with HIV myself. I told him he was going to be alright. Not according to some script that requires medical professionals to say, "HIV is not the death sentence it used to be" or with some sense of vicarious obligation to ease his fear -- but because I wanted him to see living proof of that ubiquitous proclamation sitting right in front of him.
Jacob smiled a faint smirk and nodded his head in an approving fashion. I continued with our visit, giving him references, referrals, and resources he could utilize locally in town. We ordered labs and called in his antiretroviral prescription that would be delivered to the clinic for him to pick up the next day. I gave him my cell phone and told him to reach out if he had any questions or concerns. We scheduled a follow-up appointment in one month.
As we walked down the hall to the exit, I asked him if he had any other questions for me. He didn't. He simply smiled and shook my hand, thanking me.
A few days later, Jacob's labs came back. His viral load was not back yet, and most of his labs were normal, but his T-cell count was 180, qualifying him for a clinical diagnosis of AIDS. He was going to need to take daily antibiotics for pneumonia prophylaxis until his immune system could get stronger. He also needed to be vaccinated for hepatitis B.
I texted him and told him all these things. He understood and was eager to get everything done. We arranged for him to pick up the antibiotics and receive the first dose of the vaccination. That was 10 days after our initial visit. He texted me back and told me he got the antibiotics, the vaccination, and was doing fine on his single-tablet antiretroviral regimen. His only complaint was some soreness in his shoulder after the shot. I told him to try some ibuprofen and a warm washcloth. He thanked me and the texts stopped. Twenty minutes later another text from Jacob came through.
"I do have a question though."
"Ask," I replied.
I was wondering what his question was. Was he curious about some side effects he was having? Wondering about his life expectancy and the possibility of a cure sometime in the future? How long he would have to take pneumonia prophylaxis?
I was way off.
"Did you ever find love?" he texted. "True love?" he specified for extra emphasis.
I paused. This was a question I wasn't expecting, but I was happy he asked. I answered him as honestly as I could.
"Yes, a few times." I texted back.
"You will find love."
"And your status won't matter."
He waited a few moments before responding. I pictured him reading my texts. I wondered if he believed me.
"OK, because I was worried that I wouldn't find it," he responded.
"YOU WILL. Trust me. Were you worried about that before you tested positive three years ago?" I texted back.
"Yes," he replied.
"OK. You may think this diagnosis will make it harder to find love. It won't. Your focus should be on what you learn about yourself from this … keep growing. You're young, you won't have it all figured out ever. But forgive yourself for missteps and allow room to mature and evolve.
You have a bright spirit. That is your core. Love on you … others will be drawn to that (as I'm sure they already are) and the love and intimacy you crave will come with that."
Jacob texted back almost immediately.
"Omg thank you so much. I needed that encouragement. Sometimes I feel low about myself. But I have to remind myself that I am just as valuable as everybody else."
And with that, the texts stopped.
Providers Are Human Beings, and We Should Show Our Patients
My mentors in medical school and residency were wrong.
Patients who live with diabetes need to hear when we as clinicians have been struggling with our diets, pre-diabetes, or diabetes. They need to understand that the way they don't always adhere with their blood-pressure medications is the same way we have skipped a dose of ours here or there. They need to appreciate that the way they struggle with the addictions of alcohol, drugs, sex, food, gambling, and other vices is the exact same way we struggle with ours.
Inviting our patients into who we are during clinical visits won't turn them off or make them think we are less professional or "doctorly." It will help them trust us more if they realize we are not just robots draped in white coats. We are living, feeling, fully fleshed-out human beings -- with more flaws than they can possibly imagine.
Just. Like. Them.
Try to give a little of ourselves with our patients. Help them understand that all clinicians have to be patients at some points in our lives, and we can empathize with what they are going through. Doing this may help them see us in a different, more humanistic light. If we give folks a window into who we are beyond the medical training, they may just trust us enough to ask the questions that are really on their minds. Hell, they might even show up for their next appointment.