Patients’ lived experience via comics

There are illness memoirs of many types, from essays and books to documentary films and one-person shows.  One of the sessions at the Transform Symposium yesterday focused on graphic novels and other illustrated pieces, written from the perspective of a patient, medical practitioner, or relative or friend of someone with an illness.  Comics are a powerful way to convey concepts and experiences that can be hard to explain using words alone.  The speakers showed some excerpts from a variety of comics, from the story of a parent’s cancer to a personal experience of bipolar disorder.

In the group with whom I watched that session, there was a small discussion about whether the comic format is a way to “dumb down” complicated medical information for the masses, but I would argue that deft use of graphics and text can pack a lot of emotion and meaning in a concise and powerful package.  One scene in a book they highlighted, for example, showed people having a conversation about a meal, but the word “cancer” is written over and over in the background.

One example of this sort of book is Tangles (pictured below), a graphic novel by Sarah Leavitt that tells the story of her mother’s life (and death) with Alzheimer’s disease and her own role as daughter/caregiver.  The section shared from this work during the session will stick with me.   To discover more, the website Graphic Medicine has lists of books, reviews, podcasts, and information about related conferences.

Tangles-cover

Mayo Transform Symposium

It’s time again for the Mayo Clinic’s annual Transform Symposium, which I’ve written about here a number of times.  To be more accurate, it started yesterday.

logo-transform2013

Some of the sessions today and tomorrow sound fantastic.  Check out the schedule (times are US Central) and pick a way to participate.  Mayo has set up three different real-time remote options: live streaming, an online community, and a virtual environment.  I’ll probably take advantage of the live streams, but I’ll be attending a session or two at the Mayo Clinic’s location in Second Life, as well:

Snapshot_076

I’ll post about some of my favorite speakers, but if you see something that sparks your imagination, leave a comment!

[Personal note: I'm back!  My summer was devoted to a lot of first-hand experience of the medical system, up to and including hip replacement surgery a couple weeks ago, but I'm glad to get this blog up and running again.]

Photos of anxiety

Wired has an image gallery of work from photographer John William Keedy that may provoke some thought, chuckles, and possibly some nervous tics. His image series It’s Hardly Noticeable centers on images of atypical thoughts and behaviors.  From the Wired gallery:

…Keedy prefers the work to be viewed in the larger context of normalcy and otherness, and for the narratives of each image to stand on their own. He appears in some of the images not as himself, but as a character in a scene. The photos are supposed to be thought-provoking, not conclusive. It’s specifically the conclusive nature of diagnosing certain behaviors as abnormal that bothers him.

And below, my favorite image of the bunch because I can relate to it oh so clearly!

(c) John William Keedy

The albino people of Tanzania

Slate has some images from photographer Liron Shimoni’s new series White Shadows. Albinism occurs at a far higher rate in Tanzania than the rest of the world and people who have it can be subject to discrimination, abuse, or murder. From the text that accompanies the photographs:

“In the villages, they are viewed as demons or subhuman, and called offensive terms such as ‘zero-zero’ or ‘white meat.’ There is also a widespread belief that getting close to an albino will result in the catching of the disease, or that a pregnant woman who has physical contact with an albino will then birth an albino baby of her own.”

(c) Liron Shimoni

(c) Liron Shimoni

Why don’t doctors believe their patients?

I’m going to dip into a bit of auto-ethnography in this post, but I’ll pull in some outside sources too.  Bear with me! Recently, I had a health problem diagnosed that had been overlooked or dismissed for a very long time:

For decades I’ve been clumsy, awkward, prone to walking into door jambs and falling down stairs, resulting in broken bones more than once. After one of these incidents which resulted in major hip pain when I was in my mid-20s, I went to my primary care physician for treatment.  She told me I probably strained my hip flexor.  Heat, ice, rest, and it could take a while to heal.  I moved a number of times after that, switching doctors, and as the pain continued I would mention it. I was told things such as, “injuries like that can linger”, “if you lose some weight it will feel better”, and sometimes just got a cursory nod.

My pain got worse and with it, my limp and difficulty standing, walking, and climbing stairs. In my mid-30s, a new primary care physician finally deemed my complaint worthy of an x-ray.  Two quick images were taken. “Looks like a little arthritis,” she told me dismissively.  I felt like a wimp, overreacting to a “little” problem, and after a decade of trying to explain the pain I was in – which was constant and ranged from uncomfortable to excruciating, depending on how much I used my leg – I stopped talking to doctors about it.  My friends and family got used to me limping along slowly and I waved off comments with “I’ve got a bad hip” or “It’s just a little arthritis.”  I pushed myself to do as much as I could despite the pain, but when I opted out of an activity because I knew it would hurt, I felt judged by the people around me and internalized a very negative image of myself.

In the past year it has gotten dramatically worse.  Trying to keep up with the pace of walking traffic across campus felt like a burning poker inserted in my joint.  I haven’t been able to climb stairs without pulling myself up by the railing.  I can’t sleep through the night.  Because of being dismissed by doctors for so many years, I was deeply ashamed of my inability to function normally. Every time I took the elevator instead of stairs, I was filled with self-loathing for being such a lazy, overreacting weakling.  Meanwhile, I swallowed ibuprofen and acetaminophen like breath mints at a garlic festival.

Finally, at the end of a check-up with my primary care physician, I tried to express how much my hip hurt and how much mobility I had lost.  He sent me for x-rays in which my hip was in an open, frog leg position, which clearly showed the problem: I have hip dysplasia.  It’s congenital and I’ve had it all my life.  In fact, my younger sibling wore leg braces as a toddler for what was probably the same condition.  When I asked my mother about it, she said, “You always did walk funny.”

My immediate response to this bad news was to burst into tears of joy.  The pain isn’t in my head, I’m not overreacting.  I felt vindicated, plus there is now a possibility that I can get proper treatment and some relief.  Hopefully, all the self-descriptors I’ve internalized — lazy, clumsy, stubborn, weak, complaining, slow — can start to fade because of the discovery that the head of my femur doesn’t fit into my hip socket and never has.

The response I had is one I’ve seen time and time again in online forums for various conditions — not only for more controversial diagnoses like chronic fatigue syndrome, attention deficit disorder, fibromyalgia, etc, but also for many that can’t be diagnosed or confirmed by visual or manual examination or a basic blood test.  I’m a relatively assertive person, educated and comfortable with medical terminology, yet I’ve had doctors dismiss my hip pain, medication side effects, and even cancer symptoms. It must be worse for others.  What is taking place? Why is there a disconnect between what the patient is experiencing and what the doctor acts upon?

In Reporting Symptoms, Don’t Patients Know Best? is an article that appeared in the New York Times three years ago.  It summarizes a study done by an oncologist who observed that patients reported side effects from chemotherapy at a much higher rate than their doctors and nurses.  He found a number of factors from both groups that contributed to this. Doctors downgrade the symptoms, thinking that they know better or making internal comparisons to other patients. Patients don’t always tell the complete story, either. They may forget, be distracted, be confused, be embarrassed, not understand their symptoms correctly, or not have an opportunity to share what they are experiencing.

Time is an issue, as many of us get a brief glimpse of a physician as she rushes through, spending most of our medical appointment time with nurses and technicians. Newsweek had a short article on this last year, Why Your Doctor Will See You – If You’re Quick. Even with my primary care physician, who has known me and my family for a few years, I had to rush in my questions at the end of the exam. I was there for a physical and nobody asked, “Are you having any problems today?” or gave me a pause in which to offer that information. I had written my concerns on a registration form, but it became clear that nobody had read it.

A Google search for “doctor doesn’t take me seriously” brings up desperate questions from people suffering from conditions ranging from lupus to PCOS to mental illnesses and beyond. Some pages like this one have well considered, intelligent advice about how to log and describe symptoms and effectively communicate them.  Time is an issue again: not everyone can concisely speak about personal, often troubling symptoms. This piece from NPR suggests that the average patient only speaks 12 to 15 seconds before he is interrupted by his physician.  That’s not much time to relate important details of personal experience.  In many of the online pleas for help a theme is hinted at: the patient’s struggle with how to perform his symptoms, not because he wants to exaggerate them but because he’s trying to find the level that meets the doctor’s expectations and gets his attention.

The relationship between physician and patient is too important for communication to be so hard.  I’m glad I finally was heard; I started physical therapy today and things are looking up.

Summer school: social epidemiology

I’m a fan of massive open online courses (MOOCs) for a number of reasons (access! better resources for autodidacts! affordable education!) and now that I have a bit more time, I’m digging into the wealth of classes available on Coursera. My first summer class is Social Epidemiology, taught by Michael Oakes of the University of Minnesota.  From his intro video, Oakes takes the perspective “that health is a collective action problem, that only when we consider social arrangements do we get a complete picture of what makes people and populations thrive.”  It’s been exciting to read the introduction notes from my classmates, who come from around the world and range from curious laypeople to physicians to students to policy makers.

There’s still time to join in — we’re just in week one of a seven-week program — but there are a wide-range of other classes available, too. I pulled a list of courses in Biology & Life Sciences, Health & Society, Medicine, and Social Sciences and it’s substantial; a huge improvement from last year when the vast majority were computer science classes. My next planned class is Neuroethics from the University of Pennsylvania, which begins in mid-September and looks juicy:

Catching (up with) MERS

Today a MERS case was announced in another country — Italy, where the patient is a man who recently traveled to Jordan (it’s being reported that one of his sons there has similar symptoms). This makes at least fifty known patients with greater than 50% mortality rate. Time to introduce our latest potentially large-scale viral adversary.

Middle East respiratory syndrome coronavirus (MERS-CoV) is one of several coronaviruses humans contract.  In fact, about 30% of cases of the “common cold” are caused by coronaviruses, but with  coronaviruses SARS and MERS, the illness can be far more severe.  Under the electron microscope, MERS looks like this:

Image source: Cynthia Goldsmith/Maureen Metcalfe/Azaibi Tamin, via cdc.gov

Image source: Cynthia Goldsmith/Maureen Metcalfe/Azaibi Tamin, via cdc.gov

It’s deadly.  As of May 29th, the WHO knew of 49 confirmed cases and 27 deaths. That’s a 55% mortality rate compared to the <10% rate of SARS.  (Reuters today says 51 patients with 30 deaths: 58% mortality.)

It can progress quickly. This slide from an article in the New England Journal of Medicine shows the rapid change in four patients, a family cluster of four men who became sick last fall. Two of them died.

We don’t know where it came from, how it can be transmitted, or much else.  The assumption is that there’s an animal source, but that hasn’t been found.  We know it can be transmitted from person-to-person, but not exactly how that happens or how contagious MERS is.  Those aren’t the only puzzles. As Laurie Garrett wrote about the case above, “The cluster of cases in this family presents a list of mysteries: Why were all the sick and dead men? With 28 people in this three-building urban household, why were these four infected, and the other 24 spared? The family lived in a big city, had no animals, ate supermarket food and had jobs that offered no contact with the virus. How did they catch MERS?”

The incubation period may be substantial.  A study of French cases of MERS released online by The Lancet yesterday estimates one incubation period as 9-12 days. This calls for longer isolation than expected and raises the risk that the virus will spread as people who don’t yet feel sick travel.

It’s centered in a troubled area.  It’s called Middle East respiratory syndrome for a reason: all currently known cases originated there (one transmission is known to have taken place outside of that region, but from a patient infected there). Millions of Syrians have been displaced during their civil war and many refugees are crammed together in camps, like this one in Jordan that was featured on yesterday’s PBS Newshour.  If the virus were to get a foothold in a place like that, it could quickly overwhelm the medical resources for refugee care.

World No Tobacco Day

Today is the World Health Organization’s World No Tobacco Day

WHO World No Tobacco Day

I’m not entirely comfortable with the WHO’s approach, though I agree with the goal.  Another poster asks, “Are you being manipulated?” which could suggest tobacco users are gullible, weak-willed followers.  It’s standard to refer to tobacco use as an epidemic and that has been the case for decades, but I struggle with drawing a line between what is and what is not an epidemic.  And, I’m skeptical about the lure to imitate movie smokers nowadays, but that could be an ethnocentric view: I grew up in a culture where the damage caused by smoking was well-known and taught to us at an early age — making movie smoking nothing more than character development — and at a time when TV and radio ads were banned.  It was a long way from 1950:

1950-cigarettes-that-soothe-your-throat

On a related note, this seems like the perfect opportunity to link to Quit Tobacco International, a project focused on tobacco use in India and Indonesia and founded by, among others, anthropologists Mark and Mimi Nichter.  From the site:

Over the next two decades, deaths due to tobacco will soar to 4.2 million annually in Asian countries, nearly twice that of more developed regions. The wealth of research knowledge and lessons learned about tobacco cessation from high income countries cannot be simply transferred into low and middle income countries (LMICs) given the vast differences in cultural norms, tobacco products and use patterns and health care and public health systems.

Cosmetic surgery and ethnicity

The Atlantic has featured a couple of good articles about this topic recently,  so I put together a roundup of related pieces:

The K-Pop Plastic Surgery Obsession from The Atlantic (24 May 2013).  This thorough article includes some quotes from anthropologist Eugenia Kaw and a reference to her work Medicalization of Racial Features: Asian American Woman and Cosmetic Surgery.  From the article: “Dr. Kang’s philosophy is about helping nature along. ‘I always try to copy the natural look, give face the ideal shape it should have been born with,’ he said.”

SBS Dateline (Australia) had a segment on the K-pop cosmetic surgery phenomenon a couple of months ago:

This Reddit thread about the 2013 Miss Korea contestants is interesting as some comments come from people living in Korea, trying to give a perspective from inside the culture.  They also reference this story from China in which a man sued his beautiful wife for marrying him under false pretenses, after she gave birth to a less-than-lovely child and then revealed she had had about $100K worth of surgery before meeting him (sounds like an urban legend to me).

Looking beyond Korea, in 2011 the New York Times published the article Ethnic Differences Emerge in Plastic Surgery. It’s not an academic or researched article;  it basically groups together a bunch of generalizations by surgeons about immigrant surgery preferences.

The Atlantic went back to the cosmetic surgery topic for today’s article Bringing Beverly Hills Cosmetic Surgery to the Middle East.

And to return to my home country, I offer you this Gawker post from 2011: A Guide to the Fake Faces of Real Housewives.  Perhaps there’s something to be said about trying to look like those seen as successful  trendy role models among those of your subculture — whether they be pop stars, actors, or trophy wives — and the dominant story isn’t that people are trying to look Caucasian, at least not anymore.

Correlation versus causation, in a graph

We’ve mentioned the relationship between ice cream and murders before, but here’s another correlation example.  Internet Explorer drives people to murderous rages!

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Source: Chris Blattman (click to visit his site)

To the often misinterpreted data of correlation, I’ll add another form of misleading evidence often found on the Internet: the personal anecdote.  I haven’t used Internet Explorer in almost a decade, and I haven’t gone on a single homicidal rampage in that time.  It must be true!