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

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.

More thoughts on unnecessary gluten avoidance

I was going to respond directly to Kristen’s post, but I don’t think WordPress lets you put hyperlinks in response comments.

It’s an interesting question, worth unpacking a little. If we agree that it’s important to respect phenomenological and subjective experience, does that mean that individuals should be free to adopt any medicalized identity as long as it doesn’t cause them harm (there are no clear negative health effects of avoiding gluten unnecessarily)? This is complicated by the way that illnesses do important work of identity formation, with illness subjectivities providing potential access to valuable forms of community and social capital- particularly in the age of internet fora and support groups (we’ve looked at this a little bit in class with Nguyen). It’s a fascinating new world of bottom-up creation of categories that are simultaneously illness and empowerment- Gillick’s analysis of jogging is a kind of precursor to this new proliferation of medicalized subcultures that are only taken up by the DSM once they reach a critical mass online. Are these conditions counterhegemonic, or just another example of technologies of the self ultimately serving the interests of governmentality? Lots of good possibilities for future research here.

Just to be provocative, if you’re OK with claims of gluten intolerance whether or not there’s a biomedical justification, how do you feel about pro-ana? Or about body integrity identity disorder, the conviction that one is healthy apart from the burden of a limb that does not feel like it belongs on your body?

The bioethicist Carl Elliott (always worth reading) wrote a great essay on BIID several years ago, and pointed out that the disorder really grew only once people were able to discuss it laterally on the internet, unmediated by the medical establishment. It’s as if the discourse actually created the symptoms in people’s bodies, in a kind of Sapir-Whorf effect.

There are lots of examples of this. This American Life just did a nice piece on the strange world of ASMR, a condition (labelled and given its properly medical-sounding acronym not by doctors, but by the online community) that makes videos like this intensely pleasant to watch. Do new illness communities develop because individuals first have symptoms, and can now discover similarly-wired people on the internet, or does the category to some degree create their somatic experience?

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.

“Be special someplace else”

Learning the social norms of public spaces, including how to interact with the variety of people you’ll meet there, is generally part of our upbringing.  My most vivid memory from before age 5 is this: walking through the dairy aisle of a grocery store with my mom, looking around, and suddenly having her grab me and hiss that I needed to stop staring. I was baffled. Staring at what? She furiously told me, “Those people are our neighbors and they’re dwarves and it’s rude to stare.” That’s when it clicked that she was talking about a short woman and her shorter son nearby, who hadn’t previously registered in my consciousness as unusual in any way. My face burned red with confusion and embarrassment (and decades as a high self-monitor ensued).

Perhaps that’s why I found this Slate essay by the mother of an autistic teenager so interesting. She cites a couple of recent examples of public behavioral conflict involving an autistic man and a child with Down’s syndrome and writes about her own challenges. Do other patrons have a right to quiet enjoyment of a meal when there is an excited autistic child nearby?  Does the family of that autistic child have a right to have dinner in a restaurant without being hidden in the back?

Amy S.F. Lutz says this:

As anyone who’s ever parented young children knows, there are two ways of sharing: taking turns or using something together. Turn-taking seems to be particularly in vogue of late, at least when it comes to autistic people in the community: Zoos, amusement parks, bowling alleys, roller skating rinks, movie theaters and purveyors of just about any type of entertainment imaginable are setting aside time particularly for individuals with autism and their families. These are fabulous programs that allow autistic children to have fun and try new activities. They also take the pressure off parents…  Philosophically, however, it bothers me: What are my children, and my friend’s children, learning about the place of the disabled in the community?

It’s an excellent question. Let me turn it to another example that may be more personal for many of us: At the university, I have had a couple of classes with a young woman with an autism spectrum disorder. The first days were the most difficult as the professor and other students learned to expect her outbursts, lack of restraint, and her harsh tone of voice. She’s very smart and often insightful, but her behavior is disruptive and has an effect on everyone in the room. Weeks into the semester, frustrated groans and awkward laughter could still be heard from distant rows whenever she blurted out a random comment. (To their credit, both professors I observed in this situation did an excellent job of trying to manage her outbursts firmly but appreciatively and to encourage the rest of the students to participate.) What should our expectations be? Are the other students learning a free lesson in tolerance and acceptance? Does the autistic student’s right to participate in the classroom take precedence over the rights of the other students, who are paying the same tuition for the class?

These aren’t new questions, and our attitudes now may be more accepting, but I don’t think we’ve reached a consensus about what is fair — or at least best, if not fair — for everyone.

Who are the weird?

There’s a fascinating article making the rounds of various blogs this week, which does a nice job of summarizing the interesting findings of a young group of psychologists looking at cross-cultural variation in a series of games and perceptual tests that have long been assumed to measure universal human qualities.  Over and over again, they are finding that Western subjects respond in very different ways than most people to these kinds of tests; in fact, Western subjects are outliers, even though the vast majority of our data on human behavior and psychology (96% of psychology studies) is limited to the study of Western populations.

This is not exactly news to most anthropologists (or to anyone; the paper the article is discussing came out a few years ago and was widely discussed then as well), but the article does not let the discipline off the hook, accusing the anthropological stance on cultural diversity of being incoherent in that we want to maintain two incompatible claims.  On the one hand, anthropologists extol cultural relativism as a basic principle, emphasizing that cultural differences are real and significant and need to be respected.  On the other, undergraduates come away from an anthropology class with the sense that we are also all underlyingly the same.

This strikes me as a fair critique to a limited extent, but the quandary of the anthropologist is less severe than that of those social sciences (psychology, economics) that want to assert the existence of an analytically accessible mind underlying and separable from cultural variables.  I think many of these kinds of social scientists will come away from the article shaken, but not despairing; maybe, they will reason, you have to try for cross-cultural representativeness for things like game theory, but surely not for things further along the biological end of the biocultural spectrum.  And yet we know from our course readings that this is not true either: we have seen that what seem like very biological processes, from so-called African “precocity” (Gottlieb) to “normal” menstruation patterns (Strassmann), are very different for most of the world than for the Westerners who have long been presumed to be typical.

The always incisive neuroanthropology blog has done a great job of giving an overview of the review article, as well as pointing out some of the problems inherent in the neologism WEIRD (Western, Educated, Industrialized, Rich, and Democratic), despite its catchiness.

How Diseases Keep You Healthy

The doctor comes into the exam room and looks at you with that stern but sympathetic look; his hands hold your test results and you feel the worst must be coming.

“I’m sorry Mrs. Smith, your test results came back you have Phenylketnonuria, more commonly known as PKU. With proper diet the effects on your neurological system can be controlled. (Then he grins) On a brighter note it protects you from miscarriages so you and the mister don’t have to worry about that family line!”

“I’m sorry Mr. Greenspan, your son Samuel has Tay-Sachs. As lipids begin to build and store in your sons brain and nervous tissue, he will become blind, deaf, and eventually be unable to swallow. (Then he grins) On a brighter note because you and your wife are both carriers of the gene you are both well protected against Tuberculosis!”

“Mr. Humanitarian, I’m sorry to say your breathing problems are due to Cystic Fibrosis, or CF. You will probably experience more repeated lung infections during your life which may lead to severe lung damage. (Then he grins) but your upcoming mission to Africa don’t you worry about those Cholera outbreaks, while you may catch it like other people you CF will protect you from it it killing you! Have a fun trip!”

All of these sound like horrible jokes; yet there is research that shows different allele mutations that occur in populations lead to immune protection against other diseases and conditions. In fact there is a strange effect that occurs that may even explain why some diseases are prone to certain groups or communities and not others. Factors that are related not only to the diseases themselves but the environment that they interact in also.  In a 2008 article by Dr. Pardis Sabeti entitled Natural Selection: Uncovering Mechanisms of Evolutionary Adaptation to Infectious Disease, he shows the relation between sickle-cell anemia and its resistance to Malaria. As those that have sickle-cell escape death from Malaria those without  the condition die off. This causes an increase in sickle-cell in the surviving group, because those without could not fight the Malaria. The population left with only a members that most likely carry sickle-cell now has a disease or condition that can be attributed to their group whereas it might not another where Malaria is not prevalent in the other groups environment weeding out non-sickle cell members.

This can also be shown in why Tay-Sachs is a condition that is normally associated with Jewish populations versus other groups and communities. In Jewish History living in ghetto like conditions was not something that singularly arose during WWII. Those conditions had occurred before, yet if for this post one wants to focus on just WWII the point still can be driven across. Crowded living conditions with bad air is a perfect breeding ground for Tuberculosis (TB). The mutation that causes Tay-Sachs has a built in defense against TB. As those in the ghettos who did not have Tay-Sachs to defend their health against TB outbreaks died, the remaining Jewish survivors were more likely to have Tay-Sachs as a result of its ability to side step the TB. Other communities or groups that did not have both conditions present in their enviroment would not have the build up of Tay-Sachs in their genetic community. This leads to Tay-Sachs associations more with people of Jewish heritage then perhaps other groups.

Some of the reasons for cross-disease protection are a result of the specific way a mutated allele may affect the surface of a blood cell to how it changes the way ones body performs a specific function i.e. an organ or its ability to breakdown specific chemical. Why some of these diseases though are more prevalent in some groups versus others though does bring into the wonders of its protection from other diseases causes an increase of its occurrence in certain populations. Remembering outside factors that contribute to a disease being carried on to future generations while non-carriers die out should be an important thought when focusing on the how and a why one person or group has/gets something while others seem to breeze through unaffected.

Two webpages at this moment discuss in small detail these occurrences, I will find some journal articles that also detail this and tag them on later. To get started though is this interests you:

Dr. Sabeti’s article from Nature Education can be found at:

http://www.nature.com/scitable/topicpage/natural-selection-uncovering-mechanisms-of-evolutionary-adaptation-34539

PBS also has a quick comment page on a few conditions that provide protection from other, it can be found at:

http://www.pbs.org/wgbh/evolution/educators/course/session7/explain_b_pop1.html

Munchausen by Internet

While following a trail of links from an article about Manti Te’o’s imaginary girlfriend, I rediscovered this excellent article from The Stranger (a weekly newspaper in Seattle) about people — mostly women — who lie about illnesses online. It’s a terribly interesting read.

“Munchausen by Internet” is not considered a unique illness, though that was debated for the DSM-V, but is a form of Munchausen Syndrome in which a person fakes his/her own illnesses.  (There is also Munchausen by proxy, the most common example of which is a mother who exploits exaggerated or imaginary illnesses in her child.)

It’s easy to say that these illness fabricators are pathetic or predatory, emotional vampires who feed on the sympathy of others.  However, I find myself thinking about Ong’s work with Malaysian factory workers, Nichter’s “Idioms of Distress”, or accounts of spirit possessions (mostly of women) in various cultures.  Should we consider this an individual psychiatric disorder when the condition centers around relationships with others?  Why is it largely a female phenomenon?  Is this a culture bound syndrome?

Review of The World Until Yesterday

Worth a look:  In The Guardian, this critical but informative review of the new book The World Until Yesterday by Jared Diamond (Guns, Germs and Steel), written by Wade Davis (The Serpent and the Rainbow).  Davis presents an overview of anthropological thought as he looks at the successes and faults of Diamond’s work.  Spoiler alert: he writes, “A book of great promise reads as a compendium of the obvious, ethnology by anecdote.”

The homeless guy in the apartment next door

by Jonathan Bartlett for LA Weekly

William had been homeless for about 20 years when he received a $200,000 legal settlement. One of his first actions was to do what many would applaud: he got off the streets and out of the broken-down hotels of Los Angeles and rented an apartment.  What he did not do was bathe, wash his hair, change his clothing, wear shoes, or alter his lifestyle of keeping all of his possessions in shopping bags.

The very day he moved in, the leasing agent left soap, shampoo, towels, and a change of clothing in his apartment.  William was insulted and disgusted that his home had been “contaminated.”  By the next week, neighbors were making complaints about the foul odor they said was seeping from his unit.  A veritable battlefield of potpourri and deodorizers was laid out between his door and the next and eviction threats began.

Read the full story on the LA Weekly site: The Man Who Smelled Too Much

I couldn’t help think of a piece by Bourgeois (From Jibaro to Crack Dealer: Confronting the Restructuring of Capitalism in El Barrio) that we read in Anthropology Theory this week.  The “common sense” of the other residents of the nice apartment building is foreign to William.  If the problem is the odor leaving his home, then fine: he squirts some peppermint soap under the door and calls it good.  His neighbors, the building management, and the eventual jury he faces can’t comprehend why he doesn’t simply bathe, put on shoes, and change his clothes.  The foreman is baffled why William won’t cut his hair, since “it grows back.”  There is some victim-blaming going on, but what about the rights of his neighbors?  The comments on the article make for an interesting read, as well.