NARRATIVE MEDICINE

Narrative Health: Using Story to Explore Definitions

of Health and Address Bias in Health Care
EmmaLee Pallai, MFA1; Kim Tran, PharmD1 Perm J 2019;23:18-052
E-pub: 01/24/2019 https://doi.org/10.7812/TPP/18-052

ABSTRACT as a means to bring back the communication stream often lost

When defining health and illness, we often look to governing between physician and patient. Rita Charon defines narrative
bodies such as the Centers for Disease Control and Prevention and medicine as “medicine practiced with narrative skills or recogniz-
the World Health Organization rather than our communities. With ing, absorbing, interpreting, and being moved by stories of ill-
health disparities prominent throughout the US, it is important to ness.”3 Although narrative competence and skills are important,
look at the structures we have set forth in health care and find new we need to move past the idea that health is completely encom-
ways to address health as well as new definitions. Storytelling is a passed by the realm of medical practice. By focusing on people
valuable tool to help understand how our communities address in communities, we can begin to understand social determinants
health and the place of the hospital or clinic in their health. Narra- of health and paths to health equity. We must listen to the stories
tive Health focuses not just on storytelling but also story listening. of those in the community, their definitions of health, and the
At the Community-University Health Care Center in Minneapolis, issues they see as important to the health of individuals, and the
MN, we have implemented narrative health programs with patients health of their community. Thus, we need to move past narrative
and learners from various health professions. Using creative writing medicine and toward narrative health.
pedagogy and techniques to decentralize the practitioner-patient
binary of illness, we learn about our patients’ stories of health and HISTORY OF DEFINING HEALTH
experiences with health care. It is important to move past the The World Health Organization defines health as “a state of
definitions of health to the complexities of story that allow for the complete physical, mental, and social well-being and not merely
human aspects of illness to be absorbed and understood. the absence of disease or infirmity.”4 This definition is the first
principle in the preamble to the World Health Organization’s
INTRODUCTION constitution, which was ratified in 1948.4 Health disparities, ac-
When speaking about health, we need to broaden our pa- cording to the Centers for Disease Control and Prevention, are
rameters and define health in a way that includes the social “preventable differences in the burden of disease, injury, violence,
determinants of health, that is, those elements of health that are or in opportunities to achieve optimal health experienced by so-
structuralized and take into account geographic regions of people, cially disadvantaged racial, ethnic, and other population groups,
their work, age, education level, race/ethnicity, sex, gender, and and communities.”5 However, these definitions of health and
numerous other elements of a person’s life. The role of a health disparities were likely not created in the communities to which
care center, such as a clinic or hospital, is limited in a commu- they are applied. The community where we work, the Phillips
nity. Health care centers must find ways to build relationships neighborhood of Minneapolis, MN, is an economically and
in the surrounding communities to better understand the needs ethnically varied area with many new refugees and immigrants.
of those communities and how the health care centers can best The Community-University Health Care Center (CUHCC) is
meet those needs. bordered by both the Indian Health Board and the Native Ameri-
America has one of the largest income-related health dispari- can Community Center. CUHCC has one of the most ethnically
ties in the world regarding patients’ past experiences and future diverse patient bases in the area, with a high number of patients
access to care,1 and in Minnesota there are persistent health who are Somali or of other African descent, African American,
inequities along lines of race, economic status, sexual identity, Hispanic/Latino, and Asian American (Hmong, Vietnamese,
disability, and geographical location.2 To begin to address these and others). Only 17% of our patients are of European descent
inequities, we must look at the structures that created them and as of the 2016 Uniform Data Systems data. If we reached out
listen to our communities and the stories they tell about how they to our communities to define health, would it match that of the
define health and the clinic’s place in their health. Storytelling World Health Organization? When speaking of health disparity,
is a useful tool that crosses ethnic delineations and is a powerful would our tight-knit communities feel socially disadvantaged?
way to begin understanding how to address inequities and bias
in health care.
Storytelling is well used in medicine and other professions to
help connect practitioners to their clinical practice on a more
Author Affiliations
emotional and empathetic level. Sometimes situated in medical 1
Community University Health Care Center, University of Minnesota, Minneapolis
humanities or called narrative medicine, a term coined by Rita
Charon3 in the early 2000s, storytelling in medicine is presented Corresponding Author
EmmaLee Pallai, MFA (palla024@umn.edu)

Keywords: diversity, interprofessional, listening, medical education, narrative health, narrative medicine,
social determinants of health, storytelling

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NARRATIVE MEDICINE
Narrative Health: Using Story to Explore Definitions of Health and Address Bias in Health Care

These questions are especially important when we discuss Even before then, before our items were sold and we packed
health equity and equity in general. When we speak in defini- everything into a car to spend time on the road, a modern-day
tions and those definitions are created by a dominant group, we Joad family looking for work, we were struggling. I remember our
are speaking in a very denotative, or literal, manner. This flattens main meals coming from the school lunch program. I remember
and removes the complexities involved within an issue. The idea going to the grocery store garbage bin at night to supplement
of the sound bite definition, or oversimplification to garner inter- what food stamps provided.
est, as it is used in marketing and the media, has led to a loss of There are many reasons that lead people and children into
understanding and pushing beyond the one-liner to better define, homelessness. Even though I lived through being homeless as a
and thus address, a problem.6 In simplifying these problems for a child, I will never fully understand all the complexities that led
mass audience, the media also leave out entire groups of people us there. What I do remember thinking would help us was, “If
who may be in more dire need of intervention or prevention. I only had a voice.”
This shifts focus to the negatives of a problem and does not In school we take English class to strengthen our voice so
explore the ways people can prevent, identify, or deal with the other people can hear us. I was put in speech therapy to remove
issue together.7 For example, although much has been researched my accent (or lisp depending on who is telling the story), and
and discussed in journal articles about the current opioid crisis, to further strengthen my voice. That phrase, “strengthen your
information in the popular media such as news broadcasts and voice,” was heard a lot, and I still hear it today. It’s what led
newsstand magazines focuses on the numbers of people who are me to become an English teacher—to help others strengthen
overdosing, but not as often on prescription practices or under- their voices as I had, so they could get a good job and be heard.
lying issues, including mental health and loneliness, that lead I wanted to help others by teaching them to speak and write
to substance abuse. By simplifying the language used, we lose properly. Thankfully, I learned this approach is wrong when
the meaning behind words. Words have both a denotative and looking at the core of what I wanted to do—help people be
connotative meaning. Through storytelling, one reunites words heard and ease their suffering.
with their connotative meaning, focusing on the language and In learning to strengthen my voice, my history was erased from
emotions to create stronger understanding. When speaking of my speech. As I continued to grow, going to high school and then
health equity and disparities, we need to speak with history and getting a scholarship in another city, I became alienated from
emotive awareness. To do that, we move to story. friends and family who thought I was abandoning them. I had to
Storytelling is unique in bringing contextual relations between code-switch among groups of friends, and there were those who
various areas important to the storyteller.8 It allows the storyteller felt I no longer could understand them because of how I spoke.
to connect their physical health to their mental, social, religious, In telling those who were as disadvantaged as I was in childhood
and other realms of health providing a holistic approach. This pro- that to be heard they needed to speak like others, as I was now
vides a wealth of data about perceptions of equality, either directly doing, like those outside their communities, I was helping to
through the story or indirectly through the ways in which they alienate. When we tell people to strengthen their voices, we are
physically tell the story such as tone of voice and body movement.9 telling them we are not ready to listen to them where they are.
For many of CUHCC’s patients who come from countries with Indeed, that we won’t listen until they speak in a manner closer
oral traditions, such as Somalia, storytelling—and more impor- to ours. It is the difference between asking someone to assimilate
tantly story listening—is a way to access definitions of health in and become like us rather than integration, which requires com-
our community along with how the community views realms of promise on both sides. We are adding another layer of burden on
health and how to partner with health care centers. Story is also those who are so terribly burdened to begin with.
an important tool in historically underserved populations, which This is not to say that English as a Second Language classes
are often not heard in modern medicine or have their form of and other initiatives are not helpful, but that when approaching
healing viewed as alternative or complementary medicine. In ad- our communities, our number one focus should be to listen in-
dition, the ever-increasing number of foreign medical graduates tentionally and purposefully without judgment of language and
practicing in the US bring their own culture and language into traditions in their storytelling. This is what led me to move past
practice and communication with patients. Storytelling networks narrative medicine and to look for a new paradigm, a new word
are important to increase civic engagement, enhance a sense of to encompass how important it is to listen to who is defining
belonging, and reach audiences left out of modern mass media.7 health in a community and to mutually share stories, not have
This is why the move toward narrative health is important. Nar- medicine and communities stand on opposite sides of the room.
rative health asks us to thoughtfully examine who is telling a To understand something as complex as health, we can not only
story and how they are telling the story (with a focus on how listen or not only speak. We need a circle where we share and listen
and who is defining health), to listen intentionally, and to share freely and synthesize our ideas of health with others as equals.
stories both between and within communities.
PRACTICING NARRATIVE HEALTH
THE MOVE TOWARD NARRATIVE HEALTH: E PALLAI’S STORY We must fully acknowledge the sound-bite nature of any word
My family—mother, brother, and cat—and I were homeless that talks about storytelling. The need to market to professionals
for part of my childhood. We lived in a tent, going from state requires a phrase that can be used in pitch sessions to practitio-
to state, before settling in New York, where we lived in a garage. ners, directors, deans, and others involved in health care. The

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 NARRATIVE MEDICINE
Narrative Health: Using Story to Explore Definitions of Health and Address Bias in Health Care

term narrative health was developed to encompass the aspects are all part of the culture of illness. We also gain the benefits of
of an interprofessional community outside just medicine, one creative writing, which include language usage, differences in
that includes the community and patient as a vital part of our tone and mood, and other aspects important to story.15
learning and stories. At CUHCC we conduct 2 Narrative Health
workshops: 1 with learners only and 1 with patients and learners Learner and Patient Workshops
together. When speaking with patients, we discussed the idea of In these sessions CUHCC patients and learners are paired
narrative health in earlier sessions but now have changed to call for a story writing exercise. Learners are instructed beforehand
it storytelling or just narrative workshops. We also focus on call- that they are to listen to the patient and to help as the patient
ing our patients “community members” during these workshops, instructs. In some cases this means being a scribe and asking prob-
to mitigate the practitioner-patient power structure. For ease of ing questions focused on the patient’s story. That is, to focus on
this article, we will continue to use the term patients. the sensory events being told rather than the medical ones, such
as how it felt to lie on the gurney in terms of physical sensations
Learner-Only Workshops (cold metal, straps too tight, or itchy) and emotions. Learners
As part of the University of Minnesota, CUHCC is home to a are not to diagnose, but simply to listen. If the patient does not
number of “learners” (students in the health professions) for their want to work with a learner, the learner writes his/her own story
continuity clinics, internships, or clinical rotations. Learner-only alongside the patient.
sessions offer a place for an interprofessional group of students We begin with a reading that is short and read it aloud. These
and residents to discuss health issues together while exploring can be published materials, or one written by a group member
the intersections of their growing professional identities. In in a prior session. Much like the learner sessions, we discuss the
these sessions learners read a selected piece of writing ahead reading as a group before going into our prewriting, leading to
of time to discuss with the group before working on a guided the final product. At the end, everyone is encouraged to share
writing assignment. Readings vary, from selections from graphic their stories. We discuss what we liked and want to know more
novels and memoirs, to short stories, case studies, and poems. about vs comparison or diagnosis of illness. We also discuss the
Care is given to include readings from authors of diverse back- way language is used. Learners are encouraged to share alongside
grounds. Selections from anthologies such as Beauty is a Verb: the patients.
The New Poetry of Disability,10 Women Write Their Bodies: Stories We do not limit the writing to English. One of our more im-
of Illness and Healing,11 Healing by Heart: Clinical and Ethical pactful sessions included a Somali man who brought a poem he
Case Stories of Hmong Families and Western Providers,12 and The wanted to share about battling his addiction. He read it in Somali,
Remedy: Queer and Trans Voices on Health and Health Care,13 and those who understood the language were moved to tears. We
along with writings by authors such as Sherman Alexie and had a group member who served as a Somali interpreter say it
Lynda Barry, are explored through a creative writing lens. We was too beautiful and complex a poem to translate into English.
first discuss the readings as elements of literature and what The emotions were raw and visible in people’s reactions, leading
drew us in as readers, before we talk about the implications to us to comment on how moving it was despite not speaking the
health care and development as a practitioner. For example, language. A debrief with learners later led to a discussion about
when reading Sherman Alexie’s14 short story, “What You Pawn how this mirrors what happens in the clinic on a daily basis. Often
I will Redeem,” we opened with general thoughts about the patients who do not speak English come into the examination
writing style, the winding narrative, and initial reactions. We room, and we need to understand each other, with or without an
talked about the frustrations of narrative styles that occur in interpreter. It also gave us a chance to reinforce that a community
differing populations, and then we discussed experiences during does not have to speak the same language. We are a community
patient encounters that mirror the protagonist’s narration. This connected by health and illness, linking us in a common humanity.
led to us debating how information was relayed in the story,
and in real-life encounters, vs what learners are taught in their Benefits of Narrative Health Workshops
respective schools. From there, the discussion moved to social Narrative Health workshops were initially conceived as an
determinants of health—those presented in the story and those educational intervention to teach future health care practitioners
that might lead a patient to “noncompliance.” varying ways of communicating with a focus on listening. It was
We approach the writing section from a creative writing also meant to broaden their understanding of how health is dis-
model that involves 2 to 4 prewriting questions before begin- cussed and defined by providing a number of voices, often under-
ning the final product. This helps the learners get past the initial represented in their education. One of the themes we are seeing
response to their reflection and learn more about themselves, in our patients’ writing is how they feel healthy when connected
language, and how others use language. They may be asked to to other people and their community, such as in Ishmael Amin’s
try a different narrative style, or write a poem, or write from story in which he is happy eating Somali food with a friend, or in
their patient’s point of view. They are also asked to explore times Michael Southard’s story in which we learn how being placed in
when they were ill, to connect themselves with not just their an Indian Boarding School for Native Americans as a child still
patients but also times when they themselves were a patient. By affects him today (see Supplement: Patient and Learner Stories).
using creative writing modalities, we can gain the benefits of This expands the medical view of health from residing inside the
reflection, bringing in empathetic models and recognizing we body to the wider community.

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NARRATIVE MEDICINE
Narrative Health: Using Story to Explore Definitions of Health and Address Bias in Health Care

Comments from learners include the following: [The Narra- like to see more staff involvement so the lessons learned are not
tive Health workshop] helps me to slow down and listen to my pa- just for our health care students, but for everyone in CUHCC.
tients’ stories to help me cooperate with my patient to create a better Another aspect we would like to explore is collecting these sto-
therapeutic plan; [it] made me think differently about how patients ries for a wider audience to see how the voices of our community
perceive what I consider good care. I remember hearing a story about define health. We want to have their stories stand alongside the
a procedure that I thought was so great [but] that the patient found more dominant voices in health care—those of the physicians,
disorienting and terrible, and I think it helped decrease the differing other practitioners, and bigger organizations that define not
power dynamics between patient and provider. just health and health care but also access to those services and
An added benefit is that it also promotes learner wellness by what is necessary. In those ways, we hope to expand narrative
having a dedicated space for reflection and to discuss develop- health to better understand and address health disparities in
ing identities outside the technical, or denotative, realms of Minnesota and beyond. v
their professions. We have found this reconnects students in
the human aspects of health care. So often in health professions Disclosure Statement
the scientific aspects are addressed, but the personal and hu- The author(s) have no conflicts of interest to disclose.
manitarian aspects, when discussed at all, are given less weight.
These sessions, particularly the patient/learner ones, have helped Acknowledgment
facilitate learning from lived experience in addition to books or Kathleen Louden, ELS, of Louden Health Communications provided editorial
assistance.
simulated experiences.
Patients in the workshops have discussed feeling empowered How to Cite this Article
to speak about their health without worry of diagnosis or prac- Pallai EL, Tran K. Narrative health: Using story to explore definitions of health
titioner agenda. Some have said that within the group setting, it and address bias in health care. Perm J 2019;23:18-052. DOI: https://doi.
feels like therapy to have a space to be heard. Others find that org/10.7812/TPP/18-052
the act of writing the story, even if not shared, still helps. On the
clinical side, practitioners whose patients have attended said they References
learned things in their patients’ writings they had not learned 1. Hero JO, Zaslavsky AM, Blendon RJ. The United States leads other nations in
after 2 years of working with them. Although we do not share differences by income in perceptions of health and health care. Health Aff (Millwood)
2017 Jun 1;36(6):1032-40. DOI: https://doi.org/10.1377/hlthaff.2017.0006.
patients’ writing with their practitioners, the patient sometimes 2. Minnesota Department of Health. 2017 Minnesota statewide health assessment
brings it to an appointment to share. Patients have even brought in [Internet]. St Paul, MN: Minnesota Department of Health, in collaboration with the
writing to share with the group that they had continued to refine Healthy Minnesota Partnership; 2017[cited 2018 Aug 22]. Available from: www.health.
state.mn.us/healthymnpartnership/docs/2017MNStatewideHealthAssessment.pdf.
at home after a prior workshop. Through this, we are creating a 3. Charon R. The patient-physician relationship. Narrative medicine: A model for
community, learning to listen to all of our definitions of health, empathy, reflection, profession, and trust. JAMA 2001 Oct 17;286(15):1897-902. DOI:
and strengthening that first step toward health equity—acknowl- https://doi.org/10.1001/jama.286.15.1897.
4. Constitution of WHO: Principles [Internet]. Geneva, Switzerland: World Health
edging that the voices and experiences of others are important Organization; 2018 [cited 2018 Jan 19]. Available from: http://who.int/about/mission/en.
and must be heard so we can find solutions together. 5. Health disparities [Internet]. Atlanta, GA: Centers for Disease Control and Prevention;
2015 Sep 1 [cited 2018 Jan 19]. Available from: www.cdc.gov/healthyyouth/
disparities/.
CONCLUSION 6. Bugeja M. Sound Science or Sound Bite? [Internet]. Washington, DC: Inside Higher
Narrative Health workshops at CUHCC have helped us and Ed; 2006 Oct 10 [Cited 2018 Jan 19]. Available from: http://insidehighered.com/
our learners open lines of communication with our communi- views/2006/10/10/sound-science-or-sound-bite.
ties and better understand their social determinants of health. 7. Wilkin HA, Ball-Rokeach SJ. Reaching at risk groups: The importance of health
storytelling in Los Angeles Latino media. Journalism 2006 Aug 1;7(3):299-320. DOI:
Through patient and learner sessions we are learning more about https://doi.org/10.1177/1464884906065513.
the variety of voices in our community. We are also providing 8. Banks J. Storytelling to access social context and advance health equity research.
an open forum for listening, an often forgotten or not explicitly Prev Med 2012 Nov;55(5):394-7. DOI: https://doi.org/10.1016/j.ypmed.2011.10.015.
9. Lee H, Fawcett J, DeMarco R. Storytelling/narrative theory to address health
discussed part of communication, and empowering patients. By communication with minority populations. Appl Nurs Res 2016 May;30:58-60. DOI:
holding these sessions in authentic language and voices, learn- https://doi.org/10.1016/j.apnr.2015.09.004.
ers can access the emotional aspects of language and health care. 10. Bartlett J, Black S, Northen M, eds. Beauty is a verb: The new poetry of disability. El
Paso, TX: Cinco Puntos Press; 2011.
This has allowed us to teach the next generation of health prac- 11. DasGupta S, Hurst M, eds. Women write their bodies: Stories of illness and healing.
titioners the importance of narrative health and of listening to Kent, OH: Kent State University Press; 2007.
their community, one they are a part of, and how health is truly 12. Culhane-Pera KA, Vawter DE, Xiong P, Babbitt B, Solberg MM, eds. Healing by heart:
Clinical and ethical case stories of Hmong families and Western providers. Nashville,
defined by our patients and even ourselves, as we are not outside TN: Vanderbilt University Press; 2003.
the humanity of health and illness. 13. Sharman Z, ed. The remedy: Queer and trans voices on health and health care.
We have much room for growth in our program. We would Vancouver, BC, Canada: Arsenal Pulp Press; 2016.
like to expand to involve other community centers and more 14. Alexie S. What you pawn I will redeem. New Yorker 2003 Apr 21.
15. Kerr L. More than words: Applying the discipline of literary creative writing to
members of the community. By bringing narrative health to the the practice of reflective writing in health care education. J Med Humanit 2010
community and outside the clinic, we can also gain a better idea Dec;31(4):295-301. DOI: https://doi.org/10.1007/s10912-010-9120-6.
of where our place is in the greater community. We would also

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 NARRATIVE MEDICINE
Supplement: Patient and Learner Stories

Supplement: Patient and Learner Stories

When writing in Narrative Health workshops at Community-University Health Care Center (CUHCC) in Minneapolis, MN, patients
are guided through writing prompts asking them to write about a “moment” on their health journey. Narrative styles differ greatly among
our patients and cultural backgrounds. We honor their stories as they have shared them with us and provided a cross section of our population.

A MOMENT ON THE HEALTH JOURNEY A “MAGIC LANTERN”: EMOTIONAL SUPPORT

Below, a patient writes about getting a diagnosis and beginning In this session, learners were to write about a “magic lantern’” some-
to address her illness after 11 years of living with it. thing they have imbued with special powers and look to for emotional
support. Here, a pharmacy resident writes about her hairclip
Untitled
By Christine Hoey, CUHCC Patient Little Black Clip
By Dema Mohammed, Pharmacy Resident 2018
Nervously waiting, listing all my symptoms. Answering questions
very few have previously asked. Feeling heard by the right Drs and told A black hair clip that looks like any other, a little bigger than most
what I had finally. Hearing steps to be taken next. Dr observing every but smaller than the biggest. It has a few gems on it, a couple missing.
movement and noting what movements were. Checking thoroughly It takes me back to the time it went missing. I was so hung up on trying
and a diagnosis finally! I know what I have and can finally address to find it. You see, this hair clip was unlike any other. It’s the only hair
what can help and learn to live with what can’t be controlled. And clip that has lasted its time, it’s the only one that can hold up my hair
today it snowed! 1st in 34 years for me and it made it a beautiful day. in one try. I need it with me for without it I feel lost. Some days when
Fear and anxiety alleviated and better health is the goal. v I don’t feel strong, I rely on my hair clip for seeing how small it is but
thinking about what it can do gives me hope. After I had lost it and
found it I would never lose it again. It needs to be in sight, clipped onto
SENSORY ASPECTS OF ILLNESS something I would have with me for those times in need where I’ve had
In this prompt, participants were asked to focus on the sensory as- enough when I want to just throw my hair up and feel comfort. All of
pects of an illness they had. Here, a pharmacy resident writes about this from a hair clip, one unlike any other, my hair clip. v
nasal surgery

Scents of Home MEMORIES OF MENTAL ILLNESS

By Ajay Patel, Pharmacy Resident, 2017 Here one of our patients, prompted to write about a moment on her
health journey with a focus on the sensory experiences of the moment,
The pressure of metal tweezers,
writes about the day she was committed to a psychiatric unit.
Reaching far in.
Plastic sliding down my skin. Untitled
Fluid, gushing out with no end.
By Uma Oswald, CUHCC Patient
Clang of metal on metal It was a sad little square room. The door was thick and heavy as it
Tweezers fall to the tray, clanked shut behind me. It was locked—I heard the door lock. Feeling
Holding a plastic splint, slightly frightened, like a caged bird, I walked over to the makeshift
Covered in thick obstructive mucus, hospital bed—it was on wheels—and curled up in the fetal position,
Streaked with black, lined with blood. hiding under the blanket like a child. The lights were dim—I wanted
them off, so the blackness would consume me and I could pretend I
The deep grumble of his voice,
was somewhere else. The harsh light, the only bright spot in the room,
“How does that feel?”
came from the sliver of a window on the door that was connected to
Air rushes in. the doctor’s office. I knocked and the doctor, a petite woman opened
My lungs feel full for the first time. the door. Of little I could see of the office, it was a whole other world.
High on oxygen. “I’m feeling okay. You know I really don’t think I need to be here.” She
Giddiness. knew I was lying. She said I had to stay. So much for a quick escape.
I went back to the bed, and somehow, sleep overtook me. I did
I return home, not know what time it was when they came for me. It was the damn
Elated by the return of a long-lost sense doctor and a male and female EMT. They strapped me to a gurney. I
Overwhelmed at what I’ve been missing. tried not to shake. I was trying to be brave. I smiled and conversed
A room full of smoke from burning incense, with the Euro EMTs. I laughed.
Comforting and familiar. I did not know where I was going, but I knew it was a psych ward,
A tingling burn gives new happiness to an old comfort. v where mentally disturbed people went. I pictured a county jail
cafeterialike room, surrounded by a cage, doctors on the other side,
staring at us like we were monkeys. v

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Supplement: Patient and Learner Stories

A FAMILY MEMBER’S PERSPECTIVE POSITIVE ASPECTS OF ILLNESS

In this poem, a pharmacy resident writes about navigating the In this prompt, we were focusing on positive aspects of our health
hospital for a family member’s health, her role in her family, and the journey. Here, a Somali patient writes about coming home from the
ways pharmacy is utilized—hiding in pharmacy education to avoid hospital.
tough emotions as well as being called on to handle the health care
side of family illness because of her role as a pharmacy student. Untitled
By Ismael Amin, CUHCC Patient
Waiting Practioner-Patient-Interpreter Relationship
By Morgan Stoa, Pharmacy Resident 2018 I woke up and she was holding my hand.
The waiting room so warm and cozy Her eyes filled with tears.
Comfy chairs, a wonderful decorated Christmas tree I wondered, why she cried, the pictures showed me.
People waiting, last names being called
I came home and see my bed again.
When will I hear my own?
I like the sky, it was deep blue on my discharge day, it reminds
Focus on your work. me of the power of God.
Finals are this week. Shaking hands with friends again was a great feeling.
It will keep the worry away. I ate with my friend Somalian food, rice with goat meat. v

Good!
You made it
Where’d you park? Mohamed is a Somali-speaking patient at CUHCC. Here he
You will have to pull around here soon describes what an appointment is like for him working with both
a practioner and interpreter. This was written with the aid of a
My name!
How is she?
fellow participant who spoke Somali.
How did it go? Untitled
When can I see her again?
Pull the car around now, please By Mohamed Yusuf, CUHCC patient
He just said so. I will walk back and get her When I need treatment for diabetes, I go to the clinic here. After
waiting in the waiting room, finally having your name called, and
Cold, stale, sterile getting your vitals taken, you are left in the doctor’s room. You wait,
White linen sheets, small frame shaking from the cold alone. You feel lonely. When the doctor comes, they tell you your
She’s always cold blood work—if your sugar is high or low. If it is high, you feel unhappy.
Or is it the meds? You are surprised when they have to increase the medicine. The doctor
sits typing at the computer, but they look you in the eye when they
She needs socks.
talk to you. The interpreter translates word by word, so you can talk in
Well at least put the left one on now.
your own language, Somali. When the doctor talks they listen—then
I will drive home, just go pick up her medications.
they talk to you—and you listen. Then you tell the interpreter what
“Why can’t you just go. You’re the pharmacy student. you want to say—and they tell the doctor. That way, they answer ev-
I don’t even know what I am looking for.” ery question you have. Then they will tell you what to do. You all sit
there, in the small little room, in three chairs. If you have back pain,
Discharge papers, IV pulled, rolled into the winter snow there’s a place to lie down, and the doctor will examine you—here,
Still shaking pain? Here pain? Then she will decide what you need. They ask lots
Still cold of questions, but it’s okay. You feel cared for. v
Got to get her home

Her last treatment was Monday.

I was never able to go.
The work and studying I used as a bandaid is now my entire life.
Not just a simple tool to distract myself but my whole and
complete occupation.
What I wouldn’t give to go to that pharmacy.

I hope it’s at least warm.

Please tell me it’s warm
As warm as it can be
Alone in a sterile white stale room. v

6 The Permanente Journal • https://doi.org/10.7812/TPP/18-052

 NARRATIVE MEDICINE
Supplement: Patient and Learner Stories

REFLECTIONS ON CHANGE
Michael has been to almost every patient/learner writing session
we have had. In his writing, he talks about the holidays, family,
and being taken away to be put in a boarding school for Native
Americans as a young child.

Untitled
By Michael Southard – CUHCC Patient
When my mom and dad split up, I had to go live with my grandpa.
A lot of things happen while living with him. Though the one that
hurt most was having to stay in a Catholic boarding school because
my grandpa did not want to raise me. He wanted his freedom. So for
grade school to Jr high school, I was there. While there I got into a lot
of fights because I am a half breed. And the way the boarding school
try to change me (into the white man’s way of life). Not too long hair,
not to speak our language, not to believing our higher power, and
so on. And when holidays come I would be one of the two kids still
there. Never being with my family, or relative. This is why I don’t like
holidays so much. Then not knowing my own language, to speak it,
then all the fights with others, even my own cousins, and so on. This
is why I don’t like talking about my past because I go through so many
feeling. Tough!! I got to do this in order to feel better, and work this
out in a better way so I don’t feel so scared. Though I will always not
liking talking about it. There is a lot more. The one I talked about is
just the tip of my past … though I am working it out. v

The Permanente Journal • https://doi.org/10.7812/TPP/18-052 7