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

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.

Michael J. Fox as a public figure with Parkinson’s… a fictional one

I don’t watch many sitcoms, but the upcoming Michael J. Fox Show will have a spot on my DVR.  You’ve already seen the trailer above, haven’t you? It’s sweet, irreverent, and funny.  The dinner table moment that starts at 3:10 in the video just slays me.

Outside of interviews and cameos, we rarely get to see disabled people on television. I have to believe that a beloved actor with Parkinson’s disease will ensure that the details about his condition are portrayed with reasonable accuracy. It’s refreshing to see a representation of someone living with a degenerative disease; not coping, not surviving, but living.

Blogs by people with multidrug-resistant TB

Infographic from MSF

Infographic from MSF: click for full version

One of the sessions at today’s MSF Scientific Day conference is about the MSF’s TB & ME project, a site featuring blogs by people around the world who are undergoing treatment for multidrug-resistant tuberculosis (MDR-TB). The blog provides lots of information about TB and how drug resistance develops, but the focus is on the personal stories of individuals from places as disparate as the UK, Armenia, India, Swaziland and Australia. On the PLOS Medicine blog in 2011, Dr. Phillip du Cros explained the theme of TB & ME like this:

What goes through a person’s mind when they are told they have multidrug- resistant tuberculosis (MDR-TB) and face at least eight months of injections and nearly two years of medication? What are they thinking when they find out that the drugs they have to take will make them feel sick, and the side-effects they will experience could range from severe to life-threatening?

The stigma of having TB can be severe. An infected person must be isolated or wear a mask and in some cases, the weakness of a TB patient can be mistakenly seen as a sign of AIDS. TB & ME has a number of posts tagged with the keyword “stigma” which provide some insight into what it’s like to live with this disease.

The patient experience matters. That seems obvious to those of us with an anthropological mindset, yet it seems that it’s overlooked or disregarded far too often. This project is refreshing and the bloggers are powerful advocates simply by telling their own stories. I wasn’t able to watch the conference session that analyzed the effects of blogging on the patients, but the presentation slides are online and suggest that they felt more empowered, had a sense of solidarity with other patients, were more likely to adhere to the treatment, and that blogging enhanced the relationship between the patient and medical staff. I’ll post a link to the video of the session when it’s online.

Viability at 23 weeks 6 days

New chances accompany new moral dilemmas when technology is applied to human reproduction.  Don’t miss this thought-provoking podcast from Radiolab:

Technology has had a profound effect on how we get pregnant, give birth, and think about life and death. The decision to become parents was not an easy one for Kelley and Tom. Even after they sorted out their relationship issues and hopes for the future, getting pregnant wasn’t easy. But, thanks to a lot of technology, they found a way to a baby. Then, about halfway through the pregnancy, the trouble began. Neonatal nurse practitioner Diane Loisel describes helping Kelley and Tom make the most important decision of their lives. And Nita Farahany helps Jad and Robert understand the significance of viability, and how technology has influenced its meaning…making a difficult idea even harder to pin down. [Listen here]

(tip of my Stormy Kromer cap to the Twitter feeds of Somatosphere and AnthroRepro)

The early days of autism

Temple Grandin has a new book out this year —The Autistic Brain: Thinking Across the Spectrum — and Slate has an excerpt: The Autistic Brain: The origins of the diagnosis of autism — and the parental guilt-tripping that went along with it. It’s only a couple pages, but it’s an insightful look at how the culture and level of knowledge at the time can lead to radically different diagnoses and treatment approaches.

Not familiar with Grandin?  Here’s the first part of a mid-2000s BBC documentary about her, which was how I was first introduced to this fascinating woman:


You can watch her 2010 TED talk, “The world needs all kinds of minds” (which is also the name of a 2012 documentary about her that is available online). And if that isn’t enough, there are clips online from the HBO biopic Temple Grandin, starring Claire Danes, which won seven Emmys.

Blog by a doctor with Alzheimer’s disease

I’m a devoted fangirl of intelligent autobiographical blogs that attempt to capture events and emotions as they happen to to share them with a wider audience who might not have access to that experience. This is why Watching the Lights Go Out is now in my regular reading list.

Dr. David Hilfiker was diagnosed with “mild cognitive impairment, almost certainly Alzheimer’s diseaes” last September and outed himself with the creation of this blog on January first. His account is insightful and inspirational, and he says he hopes to help banish some of the stigma of the disease. Take a look.

An ongoing Asperger’s narrative

There’s a common theme in much of the writing I enjoy: personal narratives from smart, introspective, odd people.  That’s why I can’t resist Penelope Trunk.  Penelope founded three start-up companies, wrote a bestselling career advice book, and she’s now homeschooling her children and making goat cheese.  She also has Asperger’s Syndrome and she speaks about her mental processes and challenges in clear, explicit posts like “Why I’m difficult in meetings” and “What it’s like to have sex with someone with Asperger’s“.

Penelope Trunk

Penelope can be controversial and shocking in her directness, and her blog mixes career advice, trendspotting, and her personal life.  It also provides a chance to see the world through the eyes of someone whose perspective may be very different from most of ours, described vividly and intelligently.  Worth a look.

Film series on mental health in Indonesia

From Raluca Szabo:

This looks amazing.  From the facebook blurb, which claims this is the first film series on mental health and illness in the developing world:

“Afflictions: Culture and Mental Illness in Indonesia” is a 6-part series of ethnographic films on severe mental illness in Indonesia, based on material drawn from 12 years of person-centered research by writer/director Robert Lemelson. The trilogy, which follows 6 individuals of different ages and backgrounds, explores the relationship between culture, mental illness, and first-person experience. Purchase the DVDs at: www.afflictionsfilmseries.com

I will definitely be trying to acquire this one for classes.