I met Denise last spring, in a 6-week Narrative Medicine course I co-taught for social workers. She stands out in my memory of the group in many ways: her outfits were always exquisitely coordinated; her eyes sparkled and often glistened with tears; she easily offered humor, truth, and consolation. She always made comments that illuminated the texts we read together in ways I had not previously considered. Perhaps most striking of all was how profoundly the workshop seemed to impact Denise: “It was a monumental experience for me, in my life, as a clinician and as a person.”

For 28 years, Denise has been serving victims of trauma in Brooklyn and Queens. Although she considers herself strong emotionally and mentally, she inevitably experiences vicarious trauma through her work. Narrative medicine - a field based in the belief that effective clinicians must know how to receive, interpret, and help craft their clients’ stories - offers her a means to work through some of that trauma: “(It) is a healing measure that I can tap into that will keep me grounded, keep me available, keep me conscious. To never ever find myself in a position of ‘Oh, I’ve heard this, I’ve seen this before…’ No. Each time is my first time with that person. And (narrative practice) helps with that.”

As traditional narrative medicine occurs in a classroom, the course consisted of closely reading and discussing a piece of poetry or prose every week. Then each participant, facilitators included, composed a brief response to a prompt related to the reading, and shared our writing aloud with one another.

Denise has always used writing to sort out her experiences. But the practice of narrative medicine expanded her appreciation for the power of the written word: “Reading someone else’s writing and trying to make sense of it, how I might interpret it, and then using that to be able to reflect and write about a personal experience I’ve had – that blew me away.”

Denise models how clinicians can incorporate narrative practice into both their personal and professional life. She finds it helpful to do on her own during a busy day at work: “Sometimes I’ll have to sit in my office and close my door and start writing a thought that I had about an experience I just had with someone, and it’s safe. It’s in a place where I know I can go back to it. I can ground myself. I can be in a place of objectivity instead of subjectivity.”

Denise also introduces her clients to their own narratives during therapeutic encounters, by asking: “What was the first thing you thought when this happened to you?” She observes how an invitation for them to tell their first-hand experience of the trauma “allows them to push everyone else to the side. Often people don’t think about their first thought, their first emotion. And that gets them to a place where they can write a (first-person) narrative.” 

She guides them to develop their story, through writing or speaking: “Some write a paragraph, some only write three sentences. And those three sentences we can talk about for weeks. Some of them choose not to write at all, but instead to record their own voices. And they save those recordings in their phone, and they (listen to it) every so often.” Some of her younger clients even choose to narrate through rap.

Once they begin writing - songs, lyrics, poems, any genre - Denise sees them “healing and moving forward towards closure. They’re experiencing and developing or recognizing skills they had but suppressed or pushed to the side, because they didn’t consider it important. But it’s that very strength they have in them that draws them to a place of healing.” There is a sense of ownership, mastery, and pride that they gain from becoming authors of their life experiences.

Denise encourages her clients to see themselves as she sees them: individuals who have experienced traumatic events, not victims whose stories can be lumped together in domestic violence tropes. She discourages them from telling their stories as: “I’m a victim of domestic violence and this is what we victims of domestic violence…” Denise instead tries to help each client realize, through crafting a unique story, that “You’re an individual. This is what you went through. How did it affect you: your thoughts, your body, your emotions? I want them to be able to write that out. That narrative is so crucial.”

Denise recognizes, in herself and her clients, the radical changes that narrative practice can cause: “It keeps you from being stuck and unmoveable, to a place where there is mobility, and there are choices. And those choices can be so powerful that it can get people to move from A to B, but in some cases all the way down to Z (where they) find closure.”

Denise vows to carry onward in her clinical practice and personal life using narrative medicine as an unparalleled resource: “This story practice…I don’t think that there’s any medication that people can take that does the particular piece that this work does. On a cognitive level, physical level, emotional level – it’s not anything that can be replicated anywhere else.”

Below is a poem Denise wrote in honor of her clients and their experiences.

Out of the Darkness

Wounded outside in

I felt as though I have sinned

Wounded inside out

Oh how I wanted to shout

But there was no way out

Confused by the tormenting of my mind

It often told me to flee

And escape this life of mine

These intrusive thoughts

Powerful and fierce

Lead me into a world of

Self-affliction and fear

In the shadow and secret nights

You told me I was your Queen

Once you called me wife

Confused by your touch

Why did you love me so much?

Your hands strong and mighty

Forming a fist that would crush my body

So, still I stood, unaware of my own breathe

Somewhere in the corner of my mind

Wondering when will the night terror end

The story is out now and my song is strong

No longer will I hide in the corner of my mind

No longer confused and afraid of the midnight air

It stops here

Listen to my story loud and clear

I am free of the misery and constant fear

No longer vulnerable or invisible I am here

I will sing loud and strong for the courts to hear

What you have done to me over the years

It stops here.

The table has turned now

Hide in the shadow and behold your fate

As you will spend the rest of your years

Fearing those who have heard my song 

More about Denise Briales:

Denise has worked in the field of social work for the past 28 years servicing victims of trauma both from secular and sectarian backgrounds.  She herself has been exposed to many traumatic events that have made powerful imprints in my personal and professional life. Denise has long used journaling as a therapeutic tool. Since being exposed to narrative medicine, when she reads back her written words, she attains centering, grounding, awareness, and healing from the experience of vicarious trauma that affects caregivers in mental health professions. 

More about Annie Robinson:

As a patient, and as a caregiver in the role of a doula supporting women through birth, abortion, and miscarriage, I have experienced the power of stories in healing. I recently graduated from the Narrative Medicine master's program at Columbia University, and will begin at Harvard Divinity School next fall to explore the borderlines between ministry and medicine.

I also curate an oral narrative project called “Inside Stories: Medical Student Experience”, for which I interview medical students about their experiences in medical school with the intention to provide a platform for their own person healing, self-realization and empowerment through the sharing and receiving of personal stories. You can listen to their stories on iTunes podcasts or here: http://in-training.org/inside-stories.

Over the coming year, I will be working as an intern for Health Story Collaborative and writing a series of blog posts that profile remarkable individuals committed to honoring and making use of stories in health care. If you or someone you know might be interested in being interviewed, please contact me at healthstorycollaborative@gmail.com.

Gretchen Hunsberger was first diagnosed with stage 2 pancreatic cancer in 2013, which she successfully treated with radiation and chemotherapy. But fourteen months later in spring 2015, her remission ended when the cancer returned, this time at stage 4.

In June 2015, Gretchen shared her courageous story about deciding to forgo medical treatment and embrace her impending death. Gretchen realized the unparalleled value of community, and how much can be learned from individuals living in Stage 4. She mourned the loss of her vitality, but through mindfulness and meditation practices, experienced joy in the wonders of this world.

Gretchen passed away on August 31, 2015.

Resources:

To learn more about pancreatic cancer, ways to get involved, and sources of support, visit Pancreatic Cancer Action Network.

For inspiration on navigating cancer, explore Bernie Siegel and Mark Nepo's writing.

At the age of 17 at an all-male boarding school in Virginia, Jenks developed what would grow into a life-threatening eating disorder. It began with over-exercising, and quickly spiraled into bulimia, stimulant abuse, and drug and alcohol addiction.

Over the following ten years, the eating disorder ruled Jenks’s life and took uncountable things away from him. He hid his disorder for years, ashamed to tell friends and family that he was struggling with what was considered by many to be a “women’s disease.” It did not help that he did not know any males with eating issues to whom he could turn for advice.

Eventually, Jenks opened up to his family about his co-occurring issues with alcohol, drugs, and food. Hospitalizations and treatment programs helped him address his substance addiction first, but in the absence of those behaviors the eating disorder surged. He realized his pattern of trying to fill the void he felt inside with whatever was at hand: drugs, alcohol, relationships, exercise, or food.

Now 31 and in solid recovery, Jenks discusses the mixed feelings he had for years about letting go of his eating disorder: part of him wanted freedom, but another part was unwilling to give up the rituals. When Jenks began his journey towards recovery in earnest, at a treatment center called A New Journey in Santa Monica, California, it was not without stumbles.

From these experiences, Jenks realized his passion for service. He describes how his recovery is based in giving back to others who are themselves recovering from alcohol and drug addiction and eating disorders. One of Jenks’s primary missions is to encourage men to engage in open conversations about their struggles with food, which he believes is the essential first step to healing.

Originally from Rock Hill, South Carolina, Jenks currently resides in Venice, California where he works as a House Manager in a sober living house for men.

Some of the most impactful people encountered in our recovery journeys are our treatment providers. They provide invaluable education, compassion, faith in our capacity to heal, accountability, and the best of them help us relearn how to trust.

I met Kim Wyman, the dietician at Monte Nido Vista, my first night of residential treatment. It was a Monday, the day every week when those furthest along in recovery prepare dinner for the whole house. To bless the beautiful meal they prepared and to cultivate a positive mindset before eating what for some of us was quite a challenge, Kim sang “Amazing Grace.” Her heavenly voice, glowing presence, and palpable joy for sharing this food in community brought me to tears.

Though we only worked together for ten weeks, Kim’s wisdom resounds in my head to this day, guiding me to stick to recovery’s course and reminding me of the healthy ways to meet my needs. In this podcast, she shares some of her perspectives on the process of healing from an eating disorder.

How we feed ourselves is an expression of how we feel about ourselves. Sometimes the most effective way to change how we feel about ourselves is to change how we feed ourselves. Kim considers Recovery to be a process of Recovering Self. She elucidates the different parts of Self that need to be actively, compassionately cared for, and explains how one must separate physical needs from emotional needs (to be seen, heard, witnessed, and acknowledged) in order to meet them all appropriately.

Activating sensory experience is one of Kim’s hallmark methods for recovery. She encourages people to get out of their heads and into their bodies by seeking pleasure, enjoying nature, and cultivating a loving relationship with food through the creative act of cooking, truly tasting food, and eating with others.

Kim explains the 3 tenets of recovery – never weigh yourself, journal, and reach out to others – and also offers advice about how to find the best dietician for you.

In addition to being a Registered Dietician, Kim holds a Master’s in Public Health. She has been working primarily with men and women who struggle with eating disorders since 1997.

This originally appeared in Modern Loss. Republished here with permission.

I gave my inaugural eulogy at fourteen. When my best friend Liz passed away from osteosarcoma after one year of unsuccessful treatment, her mother asked if I would share something at the service. I seized the opportunity, as it seemed like a potential antidote to the grief roiling inside me.

For days, I immersed myself in boxes of photographs and stacks of letters that told the story of our friendship. I spent hours feverishly recording my memories, depicting her mischievous smile, glittering eyes, and elegant voice. On the morning of her service, I rose to the pulpit with quivering hands but a strong heart, and delivered a eulogy that was humorous, commemorative, and authentic.

Little did I know at the time what an extraordinary journey this act had launched—into myself, into writing, and into healing.

To read more, click here.

Eating disorders are grossly under-recognized as a condition that affects not only women and girls but also men and boys. Because of this, when Thomas developed anorexia at age fourteen he was faced with the added challenges of combating stigma, finding treatment, and connecting with male peers undergoing similar experiences.

After a hospital stint that restored his physical health, Thomas was declared “cured,” but his emotional problems remained unaddressed. He relapsed several years later, and this time struggled primarily with orthorexia. Undeterred by the obstacles facing men with eating disorders, Thomas took his well-being into his own hands. He made it his mission to cultivate the community and comprehensive understanding of holistic wellness that enable someone to truly begin the journey of recovery.

Thomas recalls how small his world became when he was in his eating disorder, and how obsessed he became with controlling not just food but everything in his life. He shares the techniques and tools he adopted -- like writing -- that helped him detach from ED thoughts and behaviors.

As an eating disorder recovery activist, Thomas decries the insidious gender and age discrimination in eating disorder treatment and awareness models across cultures. Societally imposed appearance standards plague men too, and it is not unusual for them to remain undiagnosed despite showing hallmark symptoms of eating disorders. Thomas’s story calls upon us all to recognize that men get eating disorders too, and to help expand treatment options and shift the recovery culture to be more inclusive.

Originally from Sydney, Australia, Thomas is a student in Tübingen, Germany, pursuing two degrees: one in Communications majoring in Media Production and the other in International Studies majoring in German. Learn more about Thomas’s work as a wellness coach, health activist, creative producer, and author of You Are Not Your Eating Disorder on his website: http://www.thomasgrainger.info/.

When Natalie was in college, the ramifications of her eating disorder reached their pinnacle when she landed in the cardiac intensive care unit. Her heart was in severe distress due to the toll that restriction and over-exercising had taken on her body. Though previously she had minimized, rationalized, and outright denied having an eating disorder, immediate attention became mandatory.

After stabilizing in an inpatient unit, Natalie sought residential care at Monte Nido Vista because she has been exposed to Carolyn Costin’s views on recovery from the book 8 Keys to Recovery from an Eating Disorder.

Natalie stayed at Vista from July through September 2014. Transitioning back into life in Chicago proved harder than she anticipated. While Monte Nido believes that everyone can become fully recovered and live a life free of an eating disorder, Natalie’s step-down treatment program in Chicago promoted the more limiting model that eating disorder symptoms can only ever be managed, never fully alleviated.

Nearly one year later, Natalie considers the tricky relationship between her depression, anxiety, and eating disorder, and admits that although she is sometimes inclined to isolate, it never serves her recovery. She reflects on what is gained by being vulnerable, and how much better she feels when she speaks her truth, without judgment. She knows she needs to be vigilantly honest with the people in her life, and to nurture the relationships that are healthy and to let go of those that aren’t. Despite the bumps of recovery, Natalie reminds herself: “I am capable” – truly, we all are.

Currently 23-years-old, Natalie lives in Chicago and is completing her last semester at college, pursuing a bachelor’s in nutrition and dietetics.

Emily’s eating disorder developed when she was just 14, shortly after she left home to attend boarding school, when her parents were getting divorced. She talks about the difficulty she had – and sometimes still has – in speaking and claiming the word “bulimia”. She reflects on how her eating disorder was not born from body hatred, but rather a plethora of painful emotions seething inside her.

For years, Emily’s eating disorder was her hidden identity, active to varying degrees but always present. She was convinced it would always be a part of her life. But finally, when she was 28, her family confronted her and revealed that they knew about it. Emily allowed them to serve as her initial motivation to begin recovery. 

When she first entered treatment, Emily struggled to even find the words to articulate her feelings, thoughts, and behaviors. But as she began to crumble in the safety of treatment, she also began to blossom.

Now 32, Emily resides in San Diego, California where she devotes herself to mothering her 20-month-old daughter, Winnie. She shares her aspirations for Winnie, and the values born from her experiences in recovery that steer her parenting decisions. And she speaks about how being a mom has bolstered her along the path of recovery, and celebrates how far she has come.

On July 7, 2014, Kelly arrived at Monte Nido Vista. On July 7, 2015, she celebrated her first year in recovery. When we spoke just before her anniversary, she marveled at everything being in recovery has afforded her.

Originally from New Jersey, Kelly stayed in California after finishing residential treatment in order to complete her college degree at Pepperdine University, where she is now a senior.

Kelly developed anorexia when she was just thirteen years old. She spent the following nine years cycling in and out of eating disorder treatment, trying to manage her primary behaviors of restriction and over-exercising. Told by her doctors that she would never fully recover, Kelly became intensely focused on maintaining her identity as a person with an eating disorder, which provided her with a meaning and a purpose. She excelled at her eating disorder. Furthermore, the treatment centers felt like safe havens, retreats from the challenges and uncertainties in life. But eventually Kelly’s behaviors took too great a toll: her body, her mind, her spirit, and her family needed to be freed from the depleting cycle.

In her story, Kelly speaks about the impossible desire to have just a “little bit” of an eating disorder, shares the challenges she has encountered in trying to strike a balance between recovery work and social life, and identifies what keeps her committed to recovery when the road gets bumpy. She acknowledges that recovery is a long process, but she harbors the essential faith that becoming fully recovered one day is absolutely possible."

When she was a teenager, Kristie began competitive weightlifting. The sport proved to cultivate a culture of restricting and binging, and she soon developed an eating disorder. Over the years, she cycled through various behaviors, including compulsively exercising, restricting, binging, and purging.

Kristie – like so many of us – was told her disorder was chronic, that “recovery” meant maintaining her eating disorder, not overcoming it. But she wasn’t willing to settle for this prognosis. So she sought out treatment options in the Northern Hemisphere, found Monte Nido, and embarked upon her path towards recovered.

Kristie speaks candidly about the challenges of recovery: there is no clear way it is supposed to look; sometimes it is necessary to follow a meal plan, but the goal is to move towards intuitive eating; she had to acquire basic life skills that the eating disorder prevented her from learning previously; her eating disordered mentality also manifested in finances and relationships; and the differences in motivation to start recovery versus to continue in recovery.

Now two years into committed recovery, Kristie serves as a mentor for those earlier on in the journey through a global eating disorder recovery peer support program called MentorConnect. She describes the unique recovery team that she had to create herself, as professional eating disorder recovery resources are greatly lacking in the Southern Hemisphere.

Kristie expresses her perspectives that hope is the “first and crucial” element in recovery, and how important it is to revolt against cultural messages that encourage body-hatred. Her story and her dedication call us all to join her in manifesting a body-positive, hope-filled society.

Born in England to New Zealand parents, Kristie grew up in Australia, but has been living in New Zealand for five years now where she currently works for Outward Bound.

Megan, a 23-year-old New Jersey native currently residing in California and pursuing a master’s degree in global public health, arrived at Monte Nido Vista on June 5, 2014. This interview took place in June 2015 during the week of her one-year anniversary.

Once consumed with restriction and compulsive over-exercising, Megan admits that currently she struggles with orthorexia, a condition where one obsesses about eating “healthy” foods. But she has moved past her former life of dissatisfaction with herself, by stepping out of life and into treatment, where she did major self-assessment. She found her “Soul Self” – also referred to as “Healthy Self” at Monte Nido.

Megan speaks about the imperative of connecting with people, especially those who are in recovery or have recovered. She reflects on the impact both her eating disorder and her recovery have had on her family. And finally, she shares the tools, motivations, and goals that help her stick with recovery.

Anna left her home in Burlington, Vermont to begin treatment at Monte Nido Vista on April 28, 2014. More than one year into recovery at the time of the interview, 25-year-old Anna is living in Denver, Colorado and pursuing a nursing degree.

Anna is admirably candid about the challenges of recovery. Six years into her eating disorder – which involved cycles of purging, binging, over-exercising, and restricting – it became clear that she needed more intensive support than just an outpatient team in order to break the patterns. The four months Anna spent in residential treatment and then a transitional living house in California were transformative, but life back in the real world proved surprisingly difficult.

Anna admits her eating disorder still tempts her and occasionally catches her off guard with unexpected triggers. In addition to support from her boyfriend Thomas, her parents, and the recovered therapist she works with, Anna possesses an impressive self-awareness and “Healthy Self” mentality that she honed in treatment. She discusses how she challenges cultural misnomers about what “healthy” means, and the benefits of life in recovery: deeper intimacy and presence in relationships, a burgeoning sense of spirituality, and growing motivation to heal in order to help others. Though it has been rocky at times, Anna is proud of and committed to her recovery.

Listen to more stories in the Eating Disorder Recovery series here.

By Annie Robinson

If you were told you only had 8-10 months left to live, how would you spend that time?

Paul Giese was diagnosed with acute myeloid leukemia (A.M.L.) in January 2013, at age 75. He was told he had 8-10 months to live. 22 months later, on November 25, 2014, he shared the story of his remarkable journey beating the odds.

With his devoted wife Lucretia by his side, Paul endured months of chemotherapy, experimental drugs, and the trying search for a bone marrow transplant match. He navigated uncertainty, bore physical deterioration, and tolerated disappointments. He also rejoiced in the connections he shared with others, and truly made the most out of the time he had.

Paul passed away on January 14, 2015.

Resources:

To learn more about A.M.L., visit the Leukemia & Lymphoma Society’s website. They also offer information aboutsupport groups for patients and their families.

The New Yorker published an article on advances in treatment for A.M.L. this past September, 2014.

Bradley Lewis - psychiatrist, philosopher, and professor - has spent his career in the classroom and clinic attending to stories of health and illness. Two years ago, Brad’s lifelong inquiry into the crucial dimension of story in illness experience took an unforeseen turn. He entered the medical system as a patient when his eyesight began to fail, gradually but persistently, which led to a diagnosis of cataracts.

As Brad’s eyesight worsened, he grappled with the distinction between being viewed by society as able-bodied or as disabled. When he could no longer see the slides in faculty meetings, or see his students as well in the classroom, or read materials as quickly for committee meetings, he better saw how “unsympathetic the normative world can be” to the loss of functions we often take for granted. “It’s a big deal to have to navigate that.”

Brad trained in psychiatry in the early 1980’s, but felt dissatisfied with the field’s heavy emphasis on biology over biography. At the time, psychiatry was transitioning from a psychoanalytic perspective to a biological one. He recalls feeling “like they both had something valuable to say, but the two messages weren’t integrated at all...it left us to put it together as best we could.” So he started taking classes in the philosophy department to explore the mind/body connection. As he became more involved in the arts, humanities, and cultural studies, he realized that psychiatry was under-emphasizing what really matters to people when they’re going through difficult times: story.

Brad completed his psychiatric training, which he augmented with a Ph.D. in the humanities. He has written and taught extensively on the intersections between medicine and narrative, and believes stories must be prioritized as a crucial dimension of healthcare. Stories are powerful tools that can aid in healing because “stories are beyond right or wrong. They’re metaphorical.”

Soon after receiving his cataracts diagnosis, Brad opted for surgery. This surprised him, for he tends to challenge the common impulse to adopt a highly medicalized approach. In both academic and clinical settings, Brad encourages individuals to ask: “What kinds of alternative ways to telling this story might there be? What languages make sense to you?” He believes “it’s okay if we combine languages - spiritual with biological, for example. There are all kinds of stories that we can bring together to make sense of not only the past, but the future.”

In his own case, the disease model that involved seeking an immediate, surgical solution to the problem felt appropriate to him. However, he still strongly feels that “if someone doesn’t like using disease models and metaphors, that’s fine. There are lots of other models and metaphors. And if someone finds disease models and metaphors helpful, that’s okay, too.”

For clinicians working with their patients, “it’s about meeting the patient where they are, offering them language and support that best serves the healing they have to do.” Although he adopted the disease model language and approach in his own case, Brad still felt at odds with his care providers. “The doctor I finally found really just treated me like a machine. She couldn’t relate to me as a person at all, even though I guess she was one of the best.”

Like so many patients, Brad felt apprehensive entering the medical system “because a lot of people are trying to make a buck out of it. They want to sell you more than you need. And any kind of rating system is hard to make sense of. They are biased towards values that I don’t particularly share. I had to do a lot of work to find someone I thought could have a conversation with me.” And he knows, from his scholarship and clinical practice, how imperative it is for a patient to work with a caregiver who can engage with their situation as a story.

Brad has written extensively about narrative medicine, a field that examines how to be sensitive and attentive to stories in healthcare. He sees story as functioning in multiple ways: “Narrative takes a whole bunch of things that don’t seem to fit together - like our body, our illnesses, our dreams, our childhood, religion and spirituality, culture - and allows us to tell stories that bring all those variables together. Story seems to be central in helping people understand themselves in time and to put their life in perspective with a variety of different variables that are influencing them.”

Brad believes that “the practice of collaboratively telling stories in the clinical setting empowers both people in the room - clinician and patient - to begin to weave those possibilities together in a way that makes sense to them.” But the stories he brought to the providers he met with about his cataracts were not well received.

Near-sighted all of his life, Brad thought he might want to correct for near-vision. When he proposed this idea, it “befuddled” his doctor and the team because it meant he would still need to wear glasses. They shut down his request to explore this possible unfolding of his story, which caused him to once again feel outside the norm and isolated.

“So then I had to get support from friends...people who had personal experience and could help me navigate it and keep me company so I wouldn’t be all by myself with the clinical team that was so sure of itself.” Brad strongly recommends others follow suit by seeking support from alternative sources. “A lot of people who are dealing with the healthcare system need friends with them in the process. Bring comrades who’ve been through it too.”

Ultimately, the surgery was successful, and Brad accrued insights into the patient experience he hadn’t before been able to grasp so intimately. “Your personal experience matters. You’re not just a machine. You have preferences. You have to grieve for different things. You have different values about what you want. Medical decisions are personal decisions, they’re not just medical decisions, not something you can read off a medical protocol. Each person has different angles about what they care about and how they want to approach it.”

More about Brad Lewis:

Bradley Lewis MD, PhD is associate professor at New York University’s Gallatin School of Individualized Study. He has affiliated appointments in the Department of Social and Cultural Analysis and the Department of Psychiatry. Brad writes and teaches at the interface of medicine, psychiatry, humanities, and cultural/disability studies. He is an associate editor for the Journal of Medical Humanities and his recent books are Narrative Psychiatry: How Stories Shape Clinical Practice and Depression: Integrating Science, Culture, and Humanities. His current research is devoted to the ways art, politics, and spirituality impact human flowering.

More about Annie Robinson:

I have experienced the powerful effect stories have in healing as both a patient and as a caregiver in the role of a full-spectrum doula, which involves supporting women through abortion, miscarriage, and fetal loss. As a graduate of the Narrative Medicine master's program at Columbia University, my driving mission in life is to elicit, honor, and attend to stories.

I am the Assistant Director of the Center for Narrative Practice, which provides people with deep critical training in how stories work and trains them to apply this knowledge to everyday life by using narrative practice, creative arts, and the study of story. I also curate an oral narrative project called “Inside Stories: Medical Student Experiences”, for which I interview medical students about their experiences in medical school with the intention to provide a platform for their own person healing, self-realization and empowerment through the sharing and receiving of personal stories.

I am honored to serve as Program Officer for Health Story Collaborative. As such, I conduct interviews, edit audio stories, and write a blog posts that profile remarkable individuals committed to honoring and making use of stories in health care. If you or someone you know might be interested in being interviewed, please contact me at healthstorycollaborative@gmail.com.

Annie Robinson, a Health Story Collaborative team member and a recent graduate of Columbia University's Narrative Medicine program, curates the podcast "Inside Stories", a forum for medical students to share their stories of medical training. Read about this project here: 

On a warm June afternoon, clustered around picnic tables, cradled in the mountains of the Berkshires in western Massachusetts, eight medical students from around the world began telling one another their stories. They were among approximately 40 students invited to participate in a weeklong intensive program run by AMSA for medical students interested in integrative medicine called LEAPS. As a graduate student of Narrative Medicine at Columbia University, I was asked to help facilitate the program.

Over iced tea and dark chocolate, they spoke of heartbreak and grief and divorce, of exam-stress and isolation and fear. They also shared brilliant visions of innovative approaches to medical care, and their aspirations to foster intimate relationships with their fellow medical students, their families and friends, and their patients. I listened with rapt attention as they described how, from personal struggles, conviction and vision were born for their careers as caregivers. I shivered, on that muggy summer day, knowing I was in the presence of my tribe. 

I was raised to revere the power of storytelling, which has been a critical component in how I have navigated my way through the world. It proved particularly useful when I entered the healthcare system in my early adolescence. I have spent over half of my life now as a patient, grappling with illnesses and issues of embodiment. In large part, it has been by speaking my struggles aloud that I have been able to heal. Telling my stories has allowed me to harness the power of the dark times to create connections and attain insight. 

As I sat there at LEAPS, witnessing medical students experiencing what I myself had experienced time and again–that relationships and wisdom come from baring one’s soul – I began to envision a way to enable more students to engage in this powerful narrative process. The seeds for my oral narratives podcast project Inside Stories: Medical Student Experiences were planted. I wanted to hear more student stories about the path to medicine, about struggles and triumphs, roadblocks and dreams. Through sharing over the course of that week, the students gained clarity and catharsis, and many remain in touch to this day. 

Inside Stories emerged from those conversations with LEAPS students. The idea was to develop a podcast platform that would enable medical students anywhere to both voice and listen to stories about medical student experience. Inside Stories’ mission is “to provide a means of personal healing, self-realization and empowerment through the sharing and receiving of personal stories, as well as to cultivate community among students in the often isolating medical school environment.” The interview process involves recording stories from current medical students, remotely or in-person. Recruitment has been done via word-of-mouth, social media platforms, and at medical humanities conferences. Student participants comprise a diverse demographic of men and women from all four years of medical school, of various races and nationalities, interested in medical fields ranging from OB/GYN to pediatrics to gastroenterology and many more. 

The topics addressed are vast. Hannah spoke about the challenges of navigating in medical school while being a mother. Petra reflected on how her spiritual path informs the challenges being a medical student. Katie discussed the encouragement she gained from finding her mentor. Leah shared how writing poetry aided her personal healing. Samar described how self-care practices helped her get through school. Angie talked about how her Syrian heritage drove her motivation to become a physician. Hieu shared his experiences as a community health worker in Uganda propelled his motivation to combat structural violence. Carlton described his motivation to pursue medicine in the South: to offer the African-American community a provider with whom they can identify.

To date, over 40 students have participated in the project. One participant reflected: “At first I was intimidated at the prospect of sharing my deepest feelings to a public audience, especially because I had never verbalized these feelings and in general I am a very private person. Ultimately, I'm glad I committed myself to this project and am proud to have my message out in the open.” Another described how sharing felt validating: “It made it seem real - everything that I had been through.”

I hope that by listening to the accounts of the courageous, insightful students whose stories constitute this project, others will follow suit and be inspired to share the personal stories at the heart of their journeys through the world of medicine.

If you or someone you know might be interested in telling their story about their experience in medical school, or if you have further questions about Inside Stories, please contact Annie and visit their website and on Twitter @Inside_Stories.

Originally published on the blog "The Doctor is Listening" on September 14, 2014

Dr. Rita Charon, founder of Narrative Medicine, cares deeply about how patients’ stories are told. She believes there are two ways healthcare providers can tell the stories of their patients: with data derived from test results and quantifiable statistics, or with deep understanding of that patient’s experience, derived from generous listening.

Rita observes: “I’m sure many patients have the experience of that first kind of storytelling: ‘They don’t care who I am, they just care what my A1C is.’ But then in the very same place, there’s this other kind, where (a healthcare provider) is not only able to but is rewarded for really coming to understand how to listen to the deeply personal, affective, emotional aspects of not just living, being sick, and of dying.”

But how can providers incorporate this second kind of storytelling into their daily medical practices? Ronald Schleifer and Jerry B. Vannatta, co-authors of The Chief Concern of Medicine: The Integration of the Medical Humanities and Narrative Knowledge into Medical Practices, offer accessible suggestions for clinicians who want to prioritize their patient’s story in their caregiving.

Changes in how providers offer and patients receive care can start with simple but significant technical aspects of storytelling in healthcare: how trainees are taught to write. Usually, hospital notes begin with a patient’s “Chief Complaint”: “My asthma is back” or “I have chest pain” or “I fell and hurt my back.” Schleifer and Vannatta recommend in their book that in addition to a “Chief Complaint”, providers also ask for their patient’s “Chief Concern” - which is markedly different.

This year, for the first time, Rita asked the four medical students she mentored to do just that, and was pleased to see that they took the task of registering a chief concern very seriously. Even at this quite technical level, it is clear “how much it matters how these young kids - 2nd year medical students - are learning how to tell stories.”

The contrasts evident between the complaint and the concern in the examples Rita’s students recorded struck me as nothing short of poetic:

Chief complaint: “Belly pain.”
Chief concern: “I hope my cancer’s not back.” 

Chief complaint: “Relapse of pancreatic cancer.”
Chief concern: “Is it now that I’m going to die?

Chief complaint: “Shortness of breath.”
Chief concern: “Suffocation.”

Chief complaint: “Shortness of breath.”
Chief concern: “I really don’t want to be in the hospital again.”

Chief complaint: “Transfer from the coronary care unit.”
Chief concern: “I don’t understand what has happened to me.”

Chief complaint: “I was not making any sense and was confused.”
Chief concern: “I want to take care of my grandchildren.”

It deeply impresses me how easy yet meaningful it is to inquire about a patient’s chief concern. It opens up the possibility of a different degree of trust between patient and provider. But just what should students do when they hear their patient’s chief concern?

“Tune in!” Rita declared. “Notice the lived experiences and implications of an illness serious enough to get put in the hospital. And because we (ask about the chief concern) right up at the front, (providers) are able - maybe - to pay attention to the deep existential fears.”

Rita feels real optimism about this technique: “It’s not like the doctors don’t want to do this, it’s just that they’ve never been asked to...” or shown how, until now, through narrative medicine training.

Narrative medicine cultivates the development of foresight, the ability to tune in and pay attention. As evident in Rita’s stories about generous listening and asking patients about their chief concern, it’s sometimes the seemingly small gestures that can make all the difference in how clinicians hear, and care, and practice being with.

But it’s important to remember that caring for patients’ stories isn’t easy. Rita acknowledged the challenge in what she asks her medical students to do: “It’s not just: ‘Oh yeah, don’t forget, get the patient’s story…’” It’s about more than just “getting the story”. It’s about “rolling up your sleeves, and getting yourself in a position of confronting the situation’ the patient lives.” Even Rita admits: “There are a lot of things I learn that I wish I didn’t know.”

I imagine how overwhelmed caregivers must feel when confronting the unsanitized, scary, disheartening reality their patients live. But increasingly, providers are discovering that to bear witness to a patient’s whole story, they can better understand and thereby meet their patient’s needs.

Rita says, when it comes down to it, “You don’t need somebody who’s going to put their hands in front of their face and say ‘Don’t tell me about that...’ You don’t need that. You need someone who will appreciate the magnitude of what you’re talking about. And who can then maybe do something on your behalf.”

We all need our magnitudes to be acknowledged and honored, because we are not only conglomerations of numerical data, we are people with complicated, unique, and profound stories.

More about Rita:

Rita Charon, MD, PhD, is Professor of Clinical Medicine and Executive Director of the Program in Narrative Medicine at the Columbia University College of Physicians and Surgeons. She directs the Humanities and Medicine curriculum for P&S and teaches literature, narrative ethics, and medical interviewing. She also has a primary care practice at Presbyterian Hospital.

TEDxAtlanta Talk: https://www.youtube.com/watch?v=24kHX2HtU3o

More about Annie Robinson:

I have experienced the powerful effect stories have in healing as both a patient and as a caregiver in the role of a full-spectrum doula, which involves supporting women through abortion, miscarriage, and fetal loss. As a graduate of the Narrative Medicine master's program at Columbia University, my driving mission in life is to elicit, honor, and attend to stories.

I am the Assistant Director of the Center for Narrative Practice, which provides people with deep critical training in how stories work and trains them to apply this knowledge to everyday life by using narrative practice, creative arts, and the study of story. I also curate an oral narrative project called “Inside Stories: Medical Student Experiences”, for which I interview medical students about their experiences in medical school with the intention to provide a platform for their own person healing, self-realization and empowerment through the sharing and receiving of personal stories.

I am honored to serve as Program Officer for Health Story Collaborative. As such, I conduct interviews, edit audio stories, and write a blog posts that profile remarkable individuals committed to honoring and making use of stories in health care. If you or someone you know might be interested in being interviewed, please contact me at healthstorycollaborative@gmail.com.

Dr. Rita Charon, founder of Narrative Medicine, is concerned with how medical students are being taught to write about their patients. “Patients have ideas about how their stories get boiled down into abbreviations and numbers and acronyms. A 78-year-old grandmother becomes a ‘diabetic with an A1C of 11.2.’”

As an internist who also mentors medical students at the Columbia College of Physicians and Surgeons, Rita coined the term “narrative medicine” and launched the Program in Narrative Medicine at Columbia University in 2000. Her goal is to help healthcare professionals improve communication and collaboration with their patients, and to bridge the gap between the humanities and the sciences. At the heart of her mission lies the belief that effective healthcare “requires the ability to recognize, absorb, interpret, be moved by, and act on the stories of illness.” Her definitive book Narrative Medicine: Honoring the Stories of Illness has changed the course of uncountable lives, and steers the narrative medicine movement.

I first encountered Rita at my orientation to the Narrative Medicine master’s program in 2011. She emanated a quiet tenderness as she stepped gently up to the microphone - but soon into her speech she burst forth with impassioned exclamations, rallying the troop of incoming students to her cause to bring together the worlds of healthcare and literary scholarship. As deeply attentive as she is demonstrably passionate, Rita never fails to make an impression. Stories organically unfold when she speaks, on any subject.

When we conversed recently, she told me a story that illustrated exactly what narrative medicine is trying to do. This past spring, four second-year medical students were placed under Rita’s tutelage. She met with them twice a week for over two hours at a time, observed them interviewing patients and doing physical exams, and carefully read what they wrote about their patients. At the beginning of the semester, they shared with her the first formal written notes for the medical charts of a patient of theirs. One student submitted a summary of a young male patient with HIV, Hepatitis C, and a life-threatening combination of diseases on the AIDS ward - but how he wrote it dismayed Rita:

“The first five lines of what he wrote was written almost entirely in abbreviation, with a lot of numbers and percentages. There were barely any words. And this was the opening introduction for anyone who was going to take part in the care of this gentleman, this was the introduction to this gentleman’s situation! I got really upset, because the student was being taught - and expected - to write in this telegraphic, reduced, non-linguistic way.”

Rita chuckled as she shared with me the “slightly snarky” comment she offered him in response: “It’s a good idea to get in the habit of introducing a description of a patient with some English.” To her surprise and delight, he really took her suggestion to heart.

Several days after offering that comment to the student, she observed him performing a physical exam and interview with a new patient. The patient was a young man with a serious infection and a new cancer, who had previously had initial success with an earlier cancer treatment. But now, he and all the doctors knew that there was nothing more than palliative care to offer him at this point: the cancer could not be reversed or treated.

Rita recounted: “So I’m just sitting, watching. The student invited the patient to tell why he had come to the hospital, what the situation was, and then the patient, very honestly, graphically, without holding back, told the student and me what he was going through in his dying.”

“He told us about the life he had lived, which had caused his illness. He told us about his heroin use. He told us about his alcoholism. He told us about his promiscuity. He told us about his violent past. He told us about his regrets, for some of the ways he had lived part of his life. He was very, very frank. He said, ‘At this point, as I face my dying, I want to do as much as I can to give back.’

“And this student was so humble, and respectful. The only thing he did as a listener was to remain in the conversation as an active participant. He didn’t just sit by passively and let the patient tell whatever he wanted. He was engaged as a listener - he knew how to signal that he was actively listening. Every now and then he would kind of ask a question, to signal that he was actively listening. It was extraordinary. And this was the student who had written those technospeak sentences two days before!”

When Rita and the student spoke afterwards, it became apparent that the significance of the encounter really resonated with him. “He realized exactly what that patient had given up. He was as moved as was I to hear this open, honest, generous ‘Here’s what it’s like to be dying...’ Isn’t that something?” Rita and her student were both left in awe of the “remarkable, generous donation” the patient offered by entrusting them with his story.

As the student sat at the bedside of the 45-year-old dying with a belly full of cancer, receiving the man’s stories, he gave the patient the opportunity to give something back. At the end of the visit, the dying man said: “I appreciate the opportunity to impart some of what I’ve learned.” Rita witnessed how being given the chance to tell his stories “added some dignity to his life. He was able to give this young, inexperienced medical student some idea of what it’s like to be dying.”

Sometimes the seemingly subtle acts of witnessing and sharing story are the most powerful treatments, for both the patient and the physician.

More about Rita Charon:

Rita Charon, MD, PhD, is Professor of Clinical Medicine and Executive Director of the Program in Narrative Medicine at the Columbia University College of Physicians and Surgeons. She directs the Humanities and Medicine curriculum for P&S and teaches literature, narrative ethics, and medical interviewing. She also has a primary care practice at Presbyterian Hospital.

TEDxAtlanta Talk: https://www.youtube.com/watch?v=24kHX2HtU3o

More about Annie Robinson:

I have experienced the powerful effect stories have in healing as both a patient and as a caregiver in the role of a full-spectrum doula, which involves supporting women through abortion, miscarriage, and fetal loss. As a graduate of the Narrative Medicine master's program at Columbia University, my driving mission in life is to elicit, honor, and attend to stories.

I am the Assistant Director of the Center for Narrative Practice, which provides people with deep critical training in how stories work and trains them to apply this knowledge to everyday life by using narrative practice, creative arts, and the study of story. I also curate an oral narrative project called “Inside Stories: Medical Student Experiences”, for which I interview medical students about their experiences in medical school with the intention to provide a platform for their own person healing, self-realization and empowerment through the sharing and receiving of personal stories.

I am honored to serve as Program Officer for Health Story Collaborative. As such, I conduct interviews, edit audio stories, and write a blog posts that profile remarkable individuals committed to honoring and making use of stories in health care. If you or someone you know might be interested in being interviewed, please contact me at healthstorycollaborative@gmail.com. 

I have experienced the powerful effect stories have in healing as both a patient and as a caregiver in the role of a full-spectrum doula, which involves supporting women through abortion, miscarriage, and fetal loss. As a graduate of the Narrative Medicine master's program at Columbia University, my driving mission in life is to elicit, honor, and attend to stories.

I am the Assistant Director of the Center for Narrative Practice, which provides people with deep critical training in how stories work and trains them to apply this knowledge to everyday life by using narrative practice, creative arts, and the study of story. I also curate an oral narrative project called “Inside Stories: Medical Student Experiences”, for which I interview medical students about their experiences in medical school with the intention to provide a platform for their own person healing, self-realization and empowerment through the sharing and receiving of personal stories.

I am honored to serve as Program Officer for Health Story Collaborative. As such, I conduct interviews, edit audio stories, and write a blog posts that profile remarkable individuals committed to honoring and making use of stories in health care. If you or someone you know might be interested in being interviewed, please contact me at healthstorycollaborative@gmail.com.

For my first piece, I spoke with Dr. Sayantani DasGupta, a former professor of mine devoted to raising awareness in her students and in society about how to approach and honor illness narratives, and the intersections between narrative, health, and social justice.

Stories as Social Justice: An Interview with Sayantani DasGupta

“Stories are not the end goal, they’re not a treasure we dig up, they’re not a simple repository of facts, but rather, they’re a process. And listening to them is an act of social justice.”

- Dr. Sayantani DasGupta

Anyone who considers stories as central to healing swoons when listening to Dr. Sayantani DasGupta. I certainly did the first time I heard her speak, as my professor in an “Illness Narratives” class I took in Fall 2012 as a graduate student in Columbia University’s Narrative Medicine program. Sayantani’s passion for the power of story in medicine - which twinkles in her tone of voice and glitters in her eyes - is infectious.

Sayantani trained in pediatrics and earned a Master of Public Health, and now devotes her time to being a professor, writer, speaker, feminist, and mother. One of the things that most excites Sayantani is thinking about how gender, race, class, and other social factors influence how we tell the stories of our bodies.

In a recent conversation we had, she expressed concern that physicians tend to see stories as just “nice” instead of essential: “Physicians sometimes think, ‘Well, okay, that’s nice, but is it really necessary?’"

“Yes!” she insists. Through their stories, patients become contextualized in the wider system to which they belong. As Sayantani puts it, patients “are both a unique individual in this universe, and they are also not alone. They’re situated in a family, in a culture, in a community, in a social system, in a political system, in a labor system.” By listening to stories, physicians come to appreciate their patients as more than just parts and isolated disease carriers; they can see how the health of individuals is shaped by matters of social justice.

And Sayantani believes that when physicians hear patients’ stories, they are not only equipped to offer better care, but they are able to make major changes in healthcare: "The greatest potential for narrative work in healthcare is the ability of renewed attention to story to illuminate structural injustices in medicine as a profession, and healthcare as a system.”

She advises physicians to consider how "broader issues they’re thinking about, like health access, continuity of care, accurate diagnosis of treatment, long-term follow-up, are connected to narrative. If we simply think of narrative as something that feels good and is nice...then we rob it of its real power.”

It’s not only important that physicians listen to patients’ stories, it’s important how they listen. Sayantani believes that in order to provide the best healthcare, physicians must first engage in honest self-examination.

They can ask themselves: “What am I bringing to the table? What are my prejudices and expectations? What do I think about this person? Is it that they remind me of my Aunt Millie? Do I really hear their story well? Or do they frighten me and I don’t hear their story well?”

She also encourages physicians to listen with a sense of their own limitations, something she calls “narrative humility” - that we can approach stories without the assumption that we're going to always necessarily "get" all of it:

“The folks we take care of are not necessarily going to be just like us - they are very likely not going to be like us - and their stories are not something that we can become necessarily competent about.”

A medical student Sayantani once taught who had Multiple Sclerosis wrote a beautiful piece about her experience that captures the essence of narrative humility. The student wrote:

"As a patient, I urge every doctor to try and place him or herself in the patient’s shoes. Don’t stand by the foot of the bed and power over your patient. She feels small already. Take a minute, sit down, listen.”

She then offered a small piece of advice to medical practitioners reading her essay: “Try to understand. Realize that you will never understand. Try anyway.”

I shivered as Sayantani recounted these words, slowly and with reverence, and nodded in fervent agreement when she told me why she felt so moved by this simple but poignant piece:

“She’s talking about the practicalities of how to listen, but also about the inequality inherent in one person being ill, vulnerable, naked, and frightened, and the other being full of knowledge. It really brings home the social justice role and the healing role of storytelling in our work. Yes, we try to put ourselves in our patient’s shoes, but we have to be conscious of power. We also have to be conscious of what we bring to the table.”

The words echoed in our conversation, and still do in my heart:

"Try to understand. Realize that you will never understand. Try anyway.”

More about Sayantani:

Sayantani DasGupta originally trained in pediatrics and public health at Johns Hopkins University, and now serves as a core faculty member of the Program in Narrative Medicine at Columbia University. She also teaches in the Health Advocacy program at Sarah Lawrence College. In addition to being a prolific writer, she is a nationally recognized speaker on issues of gender, race, storytelling, and medical education. At Columbia, one of the classes she teaches is a Narrative, Health and Social Justice seminar, and she co-chairs a faculty seminar of the same name.

Website: http://www.sayantanidasgupta.com/

Blog: http://storiesaregoodmedicine.blogspot.com/