Are Some of My Best Students Some of Your Difficult Patients?

My heart sinks when he walks into the classroom. His scowl makes me fear for my safety. I’ve had difficult students before, and I don’t like the way they make me feel: ineffective, distrusted, disliked.

So, I understand why articles in medical journals sometimes focus on patients described as “difficult”, “heartsinks”, “frustrating”, and even “hateful.” Like my difficult students, these patients make doctors feel helpless to help.

But I learned what difficult really means from the participants in my Clemente course, Storytelling our Way to Health Equity. In one section of this Mass Humanities-funded project, medical professionals shared stories of their experiences working with members of historically marginalized communities. In the other, members of Worcester’s Clemente program shared their stories. Clemente offers free college-level courses for low-income adults. Many are immigrants, people of color, members of the LGBTQ+ community, substance users, or people with serious persistent mental health issues or disabilities. They are the most inspiring students I have ever encountered. They are passionate about learning and committed to making a difference.

Yet the stories my students told helped me understand why your heart may sink when one of them comes for treatment. After struggling with poverty and other social risk factors all their lives, these people suffer from multiple health problems, mental health issues, and chronic conditions that defy easy—or any—cures. They may be noncompliant because they cannot afford medications or no-shows because they lack transportation. They are sometimes demanding because they are desperate. They expect not to be heard.

That’s why my students’ hearts may sink when they see you walk into the exam room. Life has taught them people and systems will fail them.

Here is Dukroa Owens describing her childhood in The Sun Rose & Mama Roared:

“Moving from foster home to foster home, I dealt with sexual assault . . . [by] people who were getting paid to care for me . . . When I noticed the same thing was being done to my little sister, I made complaints to my social worker and the supervisor and . . . the District Attorney. Nothing ever happened to that family.”

In his story, If It Was Up to Me, A. J. remembers:

“I am eight years old when the state takes me away from my mom because they think she's abusing me. . . After I move in with my father . . . my stepmother hits me and throws me around. She calls me fat and tells me I'm not worth anything. She shouts that my mom and I are both stupid bitches. My sister ends up in pretty much every mental hospital in Massachusetts because her biological dad is sexually abusing her. She tells me that hospitals are . . . a place to escape and be safe where people won't hurt you. Later she changes her mind. She tells me: ‘Be careful with that because I got hurt in the hospital’. It seems like nowhere is safe.”

When Theresa Buccico’s grandmother was hospitalized, the young teenager was left to survive on her own. In See Me Through My Grandma’s Eyes Theresa writes:

“No one would be coming to help me. My biological mother was in a treatment facility for her lifelong substance use disorder. My father . . . had no contact with me. My brother was incarcerated.”

Theresa slept on couches, got a job, kept up her grades, and eventually became her grandmother’s caregiver. No system supported her.

Laura DiCaronimo also felt alone when her mom was hospitalized. In The Best Day she reflects:

“Not once were we offered outside resources for families of people with traumatic brain injuries. Not once was it suggested that we find a support group. Not one mention was ever made of the myriad nonprofits and social service agencies that could've helped us. I felt hopelessly adrift in a world that would simply chew my mom and me up and spit us out. The bills were already piling up . . . I paid her rent, which I could not afford . . . and cried.”

You are only human if you think: I can’t possibly solve all these problems. But these authors aren’t demanding that you fix everything. They are asking you to see and hear them.

Consider the conclusion of Lost in a Labyrinth of Pain, Ana Herrera’s story about the months of agony and financial distress that resulted when her concerns were ignored by her specialist:

“I will always remember the moment when my (new) oral surgeon said: ‘Trust me, I'm not leaving you alone.’ I finally felt heard. . . Thank God for the work of good doctors like these who care about and listen to their patients. They are true heroes.”

And George Odomako concludes his story about experiencing a heart attack in the inhumane conditions of a shelter, From MA to NYC:

“I am grateful to the people at Bellevue Hospital whose attention made me feel seen and heard. And I am grateful to the primary care physician and case worker who saw me as a human being. They helped heal more than just my body.”

Sadly, few medical professionals have time to listen to each patient’s life story. But reading See Me through My Grandma’s Eyes, the anthology produced by the Clemente storytelling project, allows you to see inside the lives of people who face unimaginable difficulties every day.

Each time we listen to someone’s story we are better equipped to understand those who need our help. The scowling student turned out to be incredibly gentle. I hadn’t realized autism made it difficult for him to understand facial expressions. I have been similarly wrong about the “lazy” students who were working forty-hour jobs, driving family members to immigration hearings, or suffering from depression. Their stories taught me that difficult students have difficult lives.

I suspect the same may be true of many difficult patients.

Lucia Z. Knoles is a Professor of English at Assumption University and a Board Member/Summer Instructor for the Worcester Clemente Program. Email: lknoles@assumption.edu

To reach the website where you can download See Me Through My Grandma’s Eyes, click or tap on the book cover below: