Posts tagged Perspective: Community Member
Healing Trauma Through Narrative: A Social Worker's Story

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.

Seeking (Birth) Control

I have taken approximately 2,604 birth control pills in my life. Every night for almost seven years, the incessant alarm on my phone sounds at 10pm reminding me to grab my water bottle and swallow my pill. They are a consistent aspect of my life, which being on a first-name-basis friendship with the pharmacist at my local Walgreens epitomizes. They feel like a core part of me, determining when, where, and how I start to bleed.

I began taking them in the seventh grade to regulate my hormones in order to control acne. Contrary to popular belief, I am not alone in this, as many women use birth control to regulate their periods, lessen their cramps, and curtail the debilitating symptoms of PMS.

My experience with these pills has been tumultuous, to say the least. At first, I could not say enough about their strength and success. My skin was clear, I knew exactly when my periods were starting, and I felt so grown-up taking a pill from an aluminum case every day. But that honeymoon period (pun intended) did not last long. About six months after taking my first pill, I returned to the doctor that had initially prescribed them. The pills were changing who I was as a person. My entire family had noticed that the week before my period, I became withdrawn and extremely moody, crying multiple times a day. At first, this was attributed to a combination of cliché teenage mood swings and PMS. However, it wasn’t long until the characteristics that had defined my personality– a quick sense of humor, a happy-go-lucky attitude, and a passion for pulling pranks– had all but disappeared. To my shock, my doctor explained that this was not unusual or uncommon for women taking oral contraceptives. She told me we could experiment with different formulas of pills, but some bodies simply could not handle the pills. I was devastated.

 

I have tried eight different kinds of birth control pills with varying levels of success. Although an inconvenience in my life, I came to terms over the years with the pill being a core aspect of my womanhood. But after spending a semester enrolled in Women, Gender and Sexuality Studies exploring why women deserve more than what society often expects them to accept, I have come to believe that we deserve more from our birth control products.

 My experience is not unique. Women have learned to expect serious side-effects with any form of birth control. These side-effects include, but are not limited to: nausea, weight fluctuations, headaches, anxiety, depression, and suicidal thoughts.

Strangely, there is no outrage about this extreme failure in medication efficacy. In the US, 62% of women are currently on some form of birth control, yet any action being taken to improve it is underfunded and under-appreciated. Women accept less effective medications with more side effects because we, as a society, have learned to be comfortable with a lower standard of care for women.

Widespread apathy towards women’s health is extremely evident when one looks at a recent study experimenting with men’s birth control. In this study, 320 men were given birth control shots every night for eight weeks, in an effort to share out the responsibility of avoiding unwanted pregnancies. The sample considered men of varying backgrounds and levels of sexual activity. Despite potentially optimistic results, we will never see this study brought to fruition. It was halted due to the men experiencing “severe” side effects, such as mood swings and acne. Prior to the termination of the study, many women were hopeful that men’s birth control was finally a solution to their own undesirable experiences. However, the scientists would not allow men to endure these negative side effects for even eight weeks, when millions of women experience them for the entirety of their reproductive years.

This begs the question of why society is untroubled by the less than ideal standard of care given to women yet does not believe it is acceptable for men to tolerate comparable experiences. The lack of women in STEM careers, a reluctance to believe women’s symptom descriptions, and a greed-driven pharmaceutical industry are all connected to this double standard. The compounding of these three elements creates structural inequalities in healthcare that put women in physical danger and must be addressed sooner rather than later.

Women are underrepresented and undervalued in STEM careers. I am a two-year member of WashU’s Women in STEM Club, which aims to increase support and mentoring for women in STEM fields so that they can be better prepared to endure the journey ahead of them. As a college student aspiring to have a future career in the field of medicine, this cause directly affects the trajectory of my life. A 2013 study called “What's So Special about STEM? A Comparison of Women's Retention in STEM and Professional Occupations” explored the environment faced by women in different careers. The results found that women in STEM have a statistically significant increased tendency to remove themselves from their fields. Due to careful consideration of any confounding variables, the study uncovered that the main cause for the mass exodus from upper STEM fields by women is not due to children, as many people tend to believe, but rather because of a “hostile work environment.”

This unsustainable work environment is evident at a well-known and iconic leader in the technology field, Google headquarters. In August of 2017, an executive engineer penned an internal memo to the entirety of Google named, “Google’s Ideological Echo Chamber.” In this memo, the employee explains that women are biologically more predisposed to neuroticism, have less drive for higher status, and are more agreeable than assertive. He claims, “This may contribute to the higher levels of anxiety women report on Googlegeist and to the lower number of women in high stress jobs.” He later explains that accommodations should never be made for any employees on the basis of gender or race, as the only reason women and minority groups are underrepresented in tech is because of “biological disadvantages.” This memo went unaddressed by Google leadership for many days. Eventually, an apologetic email that contained plans for improvement was sent out to the company staff, but the damage was already done.

Women’s perspectives are integral to the creation of a successful product for women, yet the vast majority of scientists creating, testing, and marketing birth control products are men. I believe men cannot possibly comprehend the debilitating side effects of birth control pills, and therefore will not fight as hard as women would to find a solution. Because of this, it is essential that we encourage and support young women considering careers in science–which must occur early in a girl’s life. A 2004 research study done by Patricia VanLeuvan uncovered that there is a massive dip in interest in science careers of young girls between the seventh grade and the first year of high school. Careers that have better representation of women, such as medicine and biological sciences, experienced a lesser decrease in interest than less represented fields, such as engineering. This research shows that when one generation of women are inspired to pursue fields in STEM, a domino effect will result in the coming generations.

A recent episode of Grey’s Anatomy, one of my personal favorite shows, explored society’s shortcomings at recognizing and treating women’s self-reported symptoms . Dr. Miranda Bailey, a world-renowned and extremely respected Chief of Surgery, goes to a rival hospital’s ER and calmly explains that she believes she is having a heart attack. The ER doctors and cardiologists, all her friends and all white males, immediately begin questioning her history of OCD and anxiety, blaming these disorders as the reason for her symptoms. Chief Bailey responds with authority and confidence, relaying that heart attacks often manifest themselves differently in women, with symptoms such as shortness of breath without pain, anxiety attacks, and jaw and neck pain. Even with her expertise and obvious medical savviness, the other doctors refuse to believe her until her heart literally stops beating for two minutes. It is no wonder that doctors regularly disregard women’s self-reported symptoms, when Dr. Miranda Bailey, one of the most beloved doctors in the TV world, was not believed when she described her condition.

A study aptly named, “The Girl Who Cried Pain,” exposed the unfortunate truth that female patients are “more likely to be treated less aggressively in their initial encounters with the health-care system until they ‘prove that they are as sick as male patients.” This statement translates more tangibly to a nationwide average 49-minute wait time for men compared to a 65-minute wait time for women after reporting the same acute abdominal pain in an ER.

The lower standard of care given to women who choose to take birth control is ignored by those who have the power to improve it, specifically a greed-driven pharmaceutical industry. “Big pharma” makes billions of dollars every year off of birth control products, including pills, IUDs, vaginal rings, patches, and shots. These profit margins are only increased by women trying multiple versions of each product, as they are forced to do when side effects are too debilitating for them to function. These profits serve as positive reinforcement for big pharma to continue making imperfect products.

For many years, big pharma companies have gotten away with imperfect pills, knowing that they are the preferred choice of birth control for sexually active women. A recent study in the UK shows that these tides are turning. Bayer Healthcare, a leader in the market of contraception products, conducted a research study investigating women’s attitude towards varying forms of birth control. This research was confirmed by the Office of National Statistics, and found that 31% of women chose, at some point in their lives, to switch from the pill to Long Acting Reversible Contraception, or LARC’s. These women were totally unsatisfied with the side effects and overall effectiveness of the pill and decided that their bodies and minds deserved better.

Society has taught women to expect a lower standard of care from all healthcare providers, ranging from doctors to CEO’s of pharmaceutical companies. This custom is dangerous for the physical and mental well-being of women, which further effects all aspects of society. Therefore, it is time that we, as women, demand more for ourselves. We deserve birth control that does its job with no side effects. We deserve to be heard when we go to the Emergency Room asking for help. We deserve to be represented in fields that make decisions about our health. We deserve (birth) control.

Works Cited:

“(Don’t Fear) The Reaper.” Grey’s Anatomy, season 14, episode 11, ABC, 1 Feb. 2018. https://www.hulu.com/watch/1215330.

Fassler, Joe. “How Doctors Take Women's Pain Less Seriously.” The Atlantic, Atlantic Media Company, 15 Oct. 2015, www.theatlantic.com/health/archive/2015/10/emergency-room-wait-times-sexism/410515/.

Glass, Jennifer L., et al. “What's So Special about STEM? A Comparison of Women's  Retention in STEM and Professional Occupations.” Social Forces, vol. 92, no. 2,  2013,  pp. 723–756. JSTOR, JSTOR, www.jstor.org/stable/43287810.

Haelle, Tara. “Does Some Birth Control Raise Depression Risk? That's Complicated.” NPR, NPR, 9 Oct. 2016, www.npr.org/sections/health-shots/2016/10/09/497087838/does-some-birth-control-raise-depression-risk-thats-complicated.

JV. “Side Effects Are OK for Women's Birth Control - but Not for Men's?” USA Today, Gannett Satellite Information Network, 1 Nov. 2016, college.usatoday.com/2016/11/01/male-birth-control-side-effects-come-on/.

Planned Parenthood. “Birth Control Methods & Options | Types of Birth Control.” Planned Parenthood, National - PPFA, www.plannedparenthood.org/learn/birth-control.

VanLeuvan, Patricia. “Young Women's Science/Mathematics Career Goals from Seventh Grade  to High School Graduation.” The Journal of Educational Research, vol. 97, no. 5, 2004,  pp. 248–267. JSTOR, JSTOR, www.jstor.org/stable/27548037.

Sarah is currently a junior at Washington University in St. Louis, studying Psychological and Brain Sciences. She strives to one day incorporate her passion for women's health into a career in the medical field.

 

A Voice for the Vulnerable

Elaine Scarry, Harvard English professor and advocate for narrative medicine, said: “To have great pain is to have certainty; to hear that another person has pain is to have doubt.”

We can never truly know what someone else’s pain feels like, or truly understand another’s experience with illness or injury.  But we are mistaken if we think that this gives us reason not to try.

As two sophomore Nursing majors and Medical Humanities minors at Boston College, we feel a personal responsibility to give voice to stories of pain—including the suffering associated with physical, emotional, and mental illness and stress we have heard from our peers. We also feel called to elicit and validate the stories of pain which haven’t yet been told. Many suffer silently every day on campus, and our hope is to provide space for these people to share their stories and thus feel less isolated.

“Underheard HSC” (@underheard_hsc), the Instagram account we’ve launched, is dedicated to sharing anonymous short health stories and art pieces by and from college students. It aims to make stories of illness, disability, and loss in college more accessible to the students facing these challenges, to encourage those who aren’t naturally inclined to write about their experiences to share their stories, and to help those who haven’t experienced such challenges to join in conversations about health and illness with those around them.

In college, there is great stigma around diseases or injuries that are considered unusual in our age group. We are expected to be young, strong, and resilient to whatever comes our way. This presumption of healthiness makes it challenging for those who undergo debilitating illnesses to express themselves. When these experiences are under-discussed, it leads to misunderstandings about the reality of being sick, and about how to best respond to and care for those around us who are experiencing these challenges. For this reason, we are particularly interested in reaching college students through our work as interns at Health Story Collaborative.

Our hope is that Underheard HSC becomes a space where young people feel less alone in their pain and comfortable enough to submit quotes or short stories about their own health.

Each of us has or will deal with health challenges in our lifetime. It’s time to start talking about it.  By taking the time to listen to and express care for the stories of our peers, we will not only be showing them kindness, but we will also begin to make space for a kind of storytelling which can lead to emotional healing. Our greatest ambition is to inspire better communication and deeper human connection. We hope that this platform welcomes students to share and serves to validate and honor every health story.

Supporting unique projects and starting new conversations can sometimes be scary, but the barriers to discussing the difficulties of illness which we have comfortably hidden behind until now are the very reason we must take a leap and open our minds to the infinite stories of illness and pain existing around us.  Please join us in taking a small but important step in showing our peers that we care: follow @underheard_hsc on Instagram.

For questions or to submit a story, please email Evelyn and Heena at hscinterns@gmail.com.

Heena Nissaraly is a sophomore at Boston College majoring in Nursing and minoring in Medical Humanities. She aims to become an empathic nurse specialized in anesthesia or hospice care, and hopes to eventually improve healthcare in Madagascar.

Evelyn Caty is a sophomore at Boston College majoring in Nursing and minoring in Medical Humanities.  She discovered for herself the utter inexpressibility of pain when she suffered from undiagnosed back pain for many years, and she hopes to use this knowledge to encourage her peers struggling with health challenges to begin healing through the telling of their own stories. She, too, hopes to use her passion for the medical humanities and for storytelling to become a compassionate and effective nurse.