One Woman's Story Of "Recovering From Psychiatry"

Laura Delano grew up in a wealthy Connecticut suburb in a family of high achievers. She was a nationally ranked squash player and student body president. But in her teen years, life got more complicated as she struggled with her own identity and felt burdened by the pressures she felt from her environment. She started to act out, cut herself, and was sent to a psychiatrist by her parents. At 14, she was diagnosed with bipolar disorder and prescribed powerful psychiatric drugs, including the mood stabilizer Depakote and Prozac. 

With medication side effects leading to additional problems and “symptoms” which in turn led to more medications, Laura says she began to lose herself. She was defined by the diagnoses she continued to collect: bipolar disorder, borderline personality disorder, substance abuse disorder and binge eating disorder. She was taking up to five psychoactive substances at a time, including an anti-depressant, an anti-psychotic, a mood stabilizer and an anxiolytic (anti-anxiety agent).

Her early twenties were marked by multiple psychiatric hospitalizations and ultimately a suicide attempt. Her only identity was a self-described "professional mental patient."

But then things began to change.

Over five years ago, Laura weaned herself off psychiatric drugs and shed her diagnostic labels. For her, this has been a spiritual journey involving the cultivation of self-acceptance, self-love and honesty. “It is the hardest thing I have ever done,” she says, but she now feels happier, more connected and more engaged in the world.

Personally, I have been moved by Laura’s story. As a practicing internist, I often rely on psychiatric diagnoses and medications. In my clinical practice, I have seen psychiatric medications reduce suffering and save lives. But it has been useful to step back and reconsider my filter on these issues.

From day one of medical training, we are taught to fit our patients into neat diagnostic categories whenever possible. The goal of our patient interactions, we learn, is to sift through and distill all that we see and hear in order to hone in on a diagnosis. This categorization can be helpful in directing our care, of course, but it can also be limiting, and even dangerous. Rarely does a diagnosis fit perfectly, yet all too often in our culture one’s diagnosis becomes indistinguishable from one’s identity. Labels have power.

With mental illness, diagnostic criteria are particularly difficult to define and identify. Truthfully, our current understanding of the brain and the biochemistry behind mental illness is limited. There are no clear markers to measure and quantify. Instead, we must rely on subjective interpretation of behavior.

And yet, psychiatric labels abound. It is estimated that one in four adults, or approximately 61.5 million individuals, and one in five teens between the ages of 13 and 18, meets criteria for a diagnosis of mental illness within a given year.

Laura would say that the medical establishment often miscategorizes healthy struggling as pathology, and that this is especially true in adolescence, when some degree of acting out is to be expected. She believes this is what happened to her.

Today, more than 20% of Americans regularly take psychotropic medications—chemical substances that alter brain chemistry and function, and ultimately emotions and behavior. In 2010, sale of such medications amounted to more than seventy billion dollars in the US, and prescription rates continue to climb for both children and adults.

Again, our scientific understanding of how these medications work is shockingly poor. It has something to do with a soup of neurotransmitters—serotonin, dopamine, norepinephrine—but we haven’t nailed down the exact mechanisms of action.

Can we really say with complete confidence that mental illness is primarily the cause of chemical imbalance in the brain? I don’t think so. Not yet anyway.

Moreover, the list of negative side-effects of these medications seems almost endless—weight gain, cognitive impairment, drowsiness, dry mouth, higher rates of diabetes, increased suicidality, sexual dysfunction to name a few--and studies suggest that long term use of such substances may actually lead to increased disability over time.

Most concerning of all is the increasing and often “off-label” (i.e., not FDA approved) use of such medications in children. For instance, the number of children receiving atypical, or second generation, anti-psychotics doubled between 2001 and 2010. Disturbingly, children on Medicaid are four times more likely to receive these drugs than kids with private insurance. What are we doing to these developing brains? Again, we really don’t know.

I am not suggesting that all psychiatric diagnoses are wrong, or that every one on psychiatric drugs should stop taking them. Even Laura would say that it would be dangerous to stop taking these drugs abruptly, without a lot of planning, personal reflection, and supports in place. I still believe that psychiatric drugs can be helpful at times, and I will continue to prescribe them, but I will do so less frequently and with more awareness and caution.

All of us, and doctors in particular, need to ask questions about our current frameworks of understanding and about our assumptions. Laura’s story has reminded me of this. Every patient is unique, and there is still so much we don’t know.

A version of this story was originally published on WBUR CommonHealth Blog March 16th, 2016. 

Contact Laura: 

Laura on Facebook: https://www.facebook.com/lfdelano

Laura on Twitter: https://twitter.com/LauraDelano

Recovering from Psychiatry on Facebook: https://www.facebook.com/recoveringfrompsychiatry/

Laura's Suggested Resources:

www.madinamerica.com-- Mad in America

www.cepuk.org-- Council for Evidence-Based Psychiatry (UK)

www.beyondmeds.com-- Beyond Meds

www.recovery-road.org-- Recovery Road

Find suggested books here

What if you were suddenly diagnosed with a potentially fatal disease just when your life, work and marriage were on track and your plans to start a family where underway?

This is what happened to Sue R. Levy. In 2008, at age 37, she was diagnosed with Pulmonary Lymphangioleiomyomatosis, otherwise known as LAM. LAM is a rare, chronic, progressive lung disease in which the lungs fill up with cysts. The result is gradual destruction of the normal lung architecture, compromised breathing, and in many cases, eventual lung transplant.

Fueled by estrogen, LAM primarily affects women in their childbearing years. With only 1300 documented cases in North America, LAM is poorly understood and at present no therapies of proven benefit exist.

Prior to diagnosis, Sue would have defined herself as happy and healthy. She had a successful career as a marketing executive, she was happily married, and she and her husband had decided to start a family. Though they struggled with infertility, undergoing six unsuccessful rounds of IVF, Sue still felt that this would work out eventually, and that perseverance would pay off.

In her words, “ My whole life I thought the way the world worked is that if you were a good person and you worked hard you could avoid bad things”. LAM changed everything.

Suddenly, Sue was forced to redefine herself as someone with a chronic disease and confront her own mortality. In addition, she had to let go of some of her dreams, first and foremost her desire for pregnancy, as the high levels of estrogen associated with carrying a child would accelerate her lung destruction. Initially, she was angry. What had she done to deserve this? Over time, though, her perspective shifted. She came to accept her diagnosis and she let go of her preconceived notions of how her life “should” unfold.

Today, Sue would say that living with a chronic disease and an uncertain future, while obviously challenging at times, has improved her life dramatically. Her disease has helped her to get in touch with what she really cares about, and has set her life on a new course. With the goal of educating and healing herself, she went to school to study nutrition and became a natural foods chef. In 2011, inspired by how great she felt after making some lifestyle changes, she quit her marketing job and started Savory Living, a nutrition and healthy eating company that provides online nutrition and healthy eating classes and cooking classes, helping others to “eat well and feel better now.”

In addition, Sue and her husband now have two young daughters, conceived using egg donors and a gestational carrier. While the journey was difficult at times, the end result is a beautiful family. Sue feels happier and healthier than she ever has.

In an upcoming follow up piece, Sue will share more about her struggle with infertility and her journey to motherhood.

Originally published on WBUR Commonhealth Blog on April 4th, 2014.

Pulmonary lymphangioleiomyomatosis resources:

1)    To learn more about LAM, visit http://www.thelamfoundation.org/what-is-lam

2)    To listen to patient stories and find more information about LAM, visit http://www.lam.org.nz/videos.htm and http://lamaction.org/for-patients-their-families/patient-support/

3)    To locate a patient support group:

• 301-592-8573 is the number for the National Heart, Lung, and Blood Institute Health Information Center that can provide information about patient support groups.

• 1-877-644-5864, extension 3 is the number for the National Heart, Lung, and Blood Institute Health and Information Pulmonary Vascular Medicine Branch, which can also provide this information.

In 2005, at the age of 36, I was diagnosed with mesothelioma, an extremely rare form of cancer caused by asbestos. I developed the disease because as a little girl I used to wear my dad’s coat – the same coat that he would wear to do construction with drywall and demolition work. Asbestos particles would travel back with him on his coat, and from there they got into my lungs.

Most people who develop the disease die within 18 months. The really lucky ones make it five years. My story is almost unheard of, as earlier this year marked 10 years of being free of this deadly disease.

The last 10 years have not been easy, but they have been a blessing despite hard times. One thing that has helped me get through it all is the work that I have done to spread awareness and educate the public about mesothelioma. I have also spent these last 10 years warning people about the dangers of asbestos, and trying to get the toxic substance banned here in the United States.

It is really amazing how many opportunities have come my way because of mesothelioma, especially because, for most people, the disease means closing rather than opening doors. I’ve met so many wonderful people and been a part of so many incredible events. It seems hard to believe in light of my original diagnosis.

In 2009, after I had attended a symposium run by the Mesothelioma Applied Research Foundation – a nonprofit organization dedicated to finding a cure for mesothelioma cancer – I became aware of the annual observance of Mesothelioma Awareness Day, started by the Meso Foundation. The idea behind this event is to have a single day when mesothelioma patients, caregivers, advocates, doctors, researchers, and others can take out all the stops and let everyone know about the disease. That day is September 26th.

But Mesothelioma Awareness Day is more than just any old awareness day. The Meso Foundation wanted to do something different. Every September 26th, supporters of the foundation-- Mesothelioma survivors, caregivers, individuals who have lost a loved one to the disease, union and industry workers exposed to asbestos--meet in New York City with the goals of coming together, learning together, and spreading awareness. On my first Mesothelioma Awareness Day, more than 50 of us met early in the morning outside of the Today show in Rockefeller Center. We wore the Meso Foundation’s T-shirts, all with large, bold letters, and held signs telling the world why we were there. The Meso Foundation combined this awareness event with a one-day seminar on malignant mesothelioma. Since, my mom and I made have made this an annual tradition. Every year, we attend the events put on by the Meso Foundation, and also take advantage of all New York City has to offer. I love having my mom be a part of something so important to me. Every year is a reminder of how far I have come since my diagnosis.

Over the past few years, I have decided to take in some other events to help bring awareness and raise money for mesothelioma research. For example, I have started participating in the Miles for Meso event, a fun 5k run or walk that has grown into multiple races held in several states. I am proud to be a participant again this year, and to be bringing my supportive husband Cam and my beautiful daughter Lily with me!

This year, for the first time, I participated in the 6th annual Kayaking 4 Meso event. Although I wasn’t able to kayak myself, I, along with the other survivors, rode down the river in a pontoon! This event, started by my close friend Mark Wells whose daughter is a 15 year survivor of the disease and only 16 when she was diagnosed, (the average age of diagnosis is 60), was held on September 10th, before Mesothelioma Awareness Day, and raised money for the Mesothelioma Applied Research Foundation. There was over 225 people kayaking down 8 miles of the Hudson River from Stillwater, NY, to Halfmoon, NY and there will be even more in attendance. Upon completion of the race, Mark was presented with the “Above and Beyond” award by Melinda Kotzian, the CEO Of the Mesothelioma Applied Research Foundation. A much deserved honor for Mark who has raised well over $50,000 for the foundation. It was so great to finally be there to support him and be there when he received the award.

All year long, I attend conferences and events and connect with patients, survivors, advocates, and others as much as possible. Back in the early years of my cancer survivorship, I even started my own observance on February 2nd that I call Lungleavin’ Day, as it marks the anniversary of the day that I had one of my lungs removed – an operation that saved my life. It started out as a small get-together with a handful of family and friends, but has since grown into an event that approximately one hundred people attend. We all write our fears on plates and then smash them in the fire to show that those fears cannot conquer us!

I know how lucky I am to have survived so long. I still sometimes struggle with strenuous activities, but this hasn’t kept me from getting out there and doing all I can. Ten years ago, when I was having a lung taken out and getting chemotherapy and radiation, I never would have guessed that I would have so many opportunities to spread awareness about my disease in order to help others.

I’m not writing all of this to pat my own back. I’m writing it in the hope that it will inspire others to get out there and spread some awareness of their own, about mesothelioma and the dangers of asbestos, or about some other rare disease or condition that has affected your own family. The important thing is just to get out there and make sure others know about it!

You can learn more about Mesothelioma Awareness Day here.

If you would be interested in writing your Mesothelioma story, please share it with us at abrewster@healthstorycollaborative.org

“Do I look man enough?”

As someone whose body falls outside the societal ideal, I have struggled to establish a positive body image. Skinny, lithe, and lean, my body might fit the mold of a long-distance runner, but one would hardly consider it stereotypically masculine. One might even say it’s feminine. And if there’s one thing men are taught to reject, it is femininity.

I have spent years painstakingly overanalyzing nutrition and exercise and appearance, trying to decipher whether my body was a body I wanted, a body I felt proud of. I’ve tried to balance my daily miles with my daily calorie intake, a strong lower body with a comparatively weaker upper body. My exercise accomplishments —hikes, long runs, marathons, personal records—can sometimes feel less valuable when I consider my frame.

While trying to make sense of my body, I’ve grappled with the rigid definitions of masculinity and femininity: what constitutes a “good” body versus a “bad” body? The construction of these illusive categories show deep-rooted problems in the way society understands health, gender, and individual expression.

In the United States, the ideal male body is muscular, athletic, formidable, and toned. I don’t have bulging or sculpted muscles. I’m not tall or broad-shouldered. And for so long I focused on how my body failed to meet standards instead of defining my own terms for body satisfaction.

My time at college is marked by small steps forward in my journey towards establishing healthy body image. It has involved coming to terms with the ways in which my body does not meet the dominant standards of masculinity. This progress is largely due to students and faculty initiating conversations and posing important questions about body image and campus culture at Boston College and other campuses across the country.

While exploring my body image, I have grappled with questions like:

“Do I look man enough?”

“Do I look masculine?”

“Do I have a good body?”

“What is a good body anyway?”

What I’ve come to value—and what has helped so much—is having space to explore these questions with others, whether in class, at a lecture, or in a friend’s living room. So many people are exploring these questions!

June was Men’s Health Month, and advocates across the country created space for discussing issues like preventive health and mental health. After long being solely cast as women’s health issues, body image and body satisfaction have become increasingly vital topics

in men’s health as well. For instance, during Love Your Body Week at Boston College, there is always an event that addresses issues of masculinity and body image.

This chiseled ideal of masculinity narrows the range of male bodies deemed acceptable, attractive, or desirable and casts an impossible mold for men and boys. If you deviate too far from that standard, you might just feel out of place. For example, restricting the ideal body to an impossible healthy and muscular standard has produced an unhealthy culture of workout supplements and bodybuilding. The body is often a source of concern and dissatisfaction, and this kind of scrutiny can have debilitating consequences for mental and physical health, as in Body Dysmorphic Disorder and Muscle Dysmorphic Disorder.

Stories about body image are necessary because they reveal the cracks in the impossible model of embodied masculinity. Even starting these conversations can be difficult because stereotypical masculinity dictates that we show unwavering confidence in the face of adversity, that we hide vulnerability. Instead of engaging honestly and critically, we keep quiet.

Against the odds, while in college, I began to embrace my own body and celebrate the remarkable and beautiful diversity of all bodies. At college, we’re encouraged to examine the way our bodies affect our relationships with friends, classmates, partners, mentors, and professional connections. What’s less talked about is how this obsession with idealized bodies affects our relationships with ourselves.

Taking part in the campus conversations about body image and learning to celebrate difference provided the momentum I needed to move forward.

I had many difficult days and experiences, like runs not intended to celebrate my body but to punish it, restrictive eating habits, and experimenting with protein supplements. But I’ve come to focus less on how my body looks, and more on what it can do. I might have a slight frame, but my accomplishments are sizeable. I’ve raced two marathons and run countless miles. I’ve hiked difficult trails, culminating in the most spectacular views. I’ve become an adventurous eater, and I’ve embraced food as nourishment and cooking as an opportunity for building connections with friends and family.

Taking a holistic approach to body image—realizing that I am more than my body as much as I am my body—has helped me recognize the value and worth of my own frame. Instead of focusing on the stereotypically masculine features I don’t have, I focus on what I do have: an agile body that supports my everyday activities, an efficient and powerful stride that powers my long distance running.

I’m only one man, but this body is man enough for me.

Christopher Kabacinski is a recent graduate of Boston College, where he studied English and medical humanities, co-founded the Medical Humanities Journal of Boston College, and led the public speaking and storytelling group Word of Mouth. Originally from Scranton, Pennsylvania, Chris now lives in Boston and works in global public health.

Born with a benign tumor (or “hemangioma”) on my left cheek, I attracted a great amount of uncomfortable attention. This attention influenced the way in which I saw myself. I often felt that my blemish prevented me from being what society considered “beautiful.”

As a girl entering her teenage years, I could not help but worry about the ways I would be viewed by others, especially by boys. When I expressed these concerns to my mom, she offered a potential solution that would require no words – a stern stare back would do the trick. I would simply be giving others a taste of their own medicine. While my voice was hushed in hopes of diverting attention away, it quickly became apparent that even this solution would not work. My work illustrates this struggle and my resulting frustration as I felt that I had no control over how people looked at me. On the contrary, it began to feel like others had more control than I did over how I perceived myself.

My comic was inspired by Miriam Engelberg’s graphic narrative, Cancer Made Me a Shallower Person, in hopes of showing rather than telling my experience with staring. My piece ends with my unsatisfied self confronting the reality of living with an abnormal mark on my face. It is difficult to change the way society views people who possess different characteristics. Such a societal approach has the power to negatively impact the illness experience of many individuals living with various disabilities, disorders, and diseases. As I matured throughout my experiences, however, I came to learn that a greater triumph can result in the way I react – by not letting the stares of others reflect onto the person I saw in the mirror. With this perspective I became a more confident individual who appreciates the differences that other people possess.

View fullsize

View fullsize

View fullsize

Karolina Mieczkowska is a senior at Boston College majoring in Biochemistry and minoring in Medical Humanities. She plans on pursuing a career in medicine as a physician.

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 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.

In Evelyn Berde’s words, “I have always felt that art has the ability to lift us out of one place and take us to another.”

Evelyn is an artist, a teacher, a healer, and a patient herself. Born with congenital scoliosis in 1950, she spent many years in and out of Massachusetts General Hospital (MGH), confined to her bed for months at a time. Her art is informed by her experience living with a “deformity”, as it was referred to in those times, as well as by her childhood growing up in the old “West End” of Boston, a low-income but culturally rich neighborhood close to MGH and the Charles River which was razed in the late 1950s, displacing many residents, and replaced by residential high rises which still stand today.

Evelyn’s childhood was marked by sadness—alcoholism in her family, the loss of her nine year old brother when she was six, not to mention her own medical condition—but it was also full of beauty, love and color. Her artwork portrays this complexity and texture.

Today, she is a wife, mother to two grown children, an art teacher and therapist as well as an extraordinary storyteller. She weaves her life stories into her art with skill and grace, and she reminds us all that we have the power within us to transform our experiences. “It’s all in you”, she says. “It’s hard to do, and it takes energy, but if you can focus on something that will bring you joy, even in the midst of tremendous sorrow and pain, it can shift everything.” 

You can listen to Evelyn talk about more of her paintings, and view the original publication of this piece on WBUR’s Commonhealth Blog here.

Years ago I had a positive experience with a remarkable Nurse Practitioner at UCLA named Sherry Goldman who was in charge of a special program for breast cancer, a disease of which I had. I was struggling with the terrible side effects of my treatments. They were getting the best of my mind, and my body.  When I walked into her office for my appointment, she did the physical examination but she also asked me how I was feeling and remarkably she waited for the answer.  I was open and honest with every detail.  She validated my feelings and made me feel less alone with my thoughts. Her medical suggestion to improve my status was to take walks every day. “Start small, short distances, a block or two and then make it longer with each day”, she suggested.

My response to her was a resounding  “NO!  I don’t want to. I don’t feel well, I don’t look good, and I don’t have the energy.”

Well, the Nurse Practitioner sat quietly for a moment, absorbing my adamant stance and then said to me those magic words, the words that only one could say if they had taken the time to really listen, while having the keen observational skills to sense what the problem was with a simple walk. What were her words? I know you’re waiting for them. Her words were, “ Then don’t walk for you Marla, walk for ME... and I want to hear how much you’ve walked when you come back to see me in two weeks.”

Suddenly my eyes lit up, my back straightened and a fire was in my belly and it wasn’t acid indigestion. That day I went home and started to walk and with each day I walked more and more, longer and further.  Soon, I was walking for hours daily, chomping at the bit to report back to Sherry with pride at my accomplishment. Two weeks later I did just that at my next appointment at UCLA, when I saw her.  I looked like a new person, and I was.

There is a belief that one shouldn’t do things just to please someone else but rather to do it to please oneself. Well, that is all well and good some of the time but there are other times when it’s imperative to break that rule. If pleasing someone else is the key to getting a person back on track and healthy again then so be it and that’s exactly what happened with me.  Not only did my health and strength improve, but I also took up jogging and now I walk and run FOR ME! and I have not stopped since. I’m entering my first 5K Marathon in March.  I have not had that kind of positive experience with the medical profession since, but I will NEVER forget what that incredibly smart and talented Nurse Practitioner did for me. NEVER!

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/