Let’s Change the Narrative…with Narrative

Some people diagnosed with cancer or a chronic health condition receive an outpouring of concern, support, and sympathy from friends and strangers alike. However, not everyone receives this unequivocal support. At first reveal of their diagnosis, some are met with judgment and stigma. As a community manager at Health Union working with online health communities, I am lucky to work with so many amazing people who are open and honest about their lives and health experiences, despite stigma. The two communities I work most closely with are the lung cancer and hepatitis C communities, where I regularly read stories of people being met with stigma, judgment, and (in my opinion) cruelty. Many are quick to label people with these diagnoses as having “done it to themselves”; however, many conditions without the false perception of self-infliction also meet a similar stigma.

There are many theories on what causes people to meet health conditions with judgment. Borrowing the sage words of a lung cancer advocate, we know that stigma hurts more than just feelings.

Stigma Can Influence Clinician Behavior

Most physicians feel their profession is a calling, a deep desire to help and heal. To say that all physicians judge and have bias against certain groups of patients is unfair and incorrect. Physicians take an oath to do no harm; but what if they were unaware that their subconscious perceptions are causing harm?

Medicine has changed a lot over the years and a physician’s job now includes far more than patient care. Electronic documentation, insurance hassles, and bureaucratic tasks have led to a documented increase in physician burnout.[1] Burnout can have a serious effect on the physician and some suggest that it can also lead to compassion fatigue and a struggle in handling difficult clinical encounters.

Research has shown that certain types of patients can be treated differently. In a 2016 survey of over 15,000 physicians across 25 different specialties, 40% of physicians admitted to some form of bias against patients. What do we know about the other 60% of physicians? Well, self-reported data is known to have its limitations and the data also may be skewed due to social desirability bias (people’s tendency to answer questions in a manner that will be viewed favorably by others). Many would presume that far more than 40% actually have some bias. Limitations aside, nearly half are still admitting to judging their patients. Among those physicians who admitted their occasional bias, the top patient characteristics that evoked bias included emotional problems, weight, level of intelligence, language differences, and insurance coverage. In addition, it was noted that patients with chronic pain may also evoke a bias in physicians.[1]

Many patients with chronic health conditions have comorbid conditions, either resulting from their main condition, or in addition to other diagnoses, all of which are emotionally and physically difficult to cope with. A number of health conditions also come with invisible symptoms. It’s easy to think someone isn’t in pain when they look perfectly normal in front of you. So, what does this mean for a patient with a chronic health condition seeking help from their trusted physician? Well, if they are overweight and report depression and pain, while speaking with poor English proficiency, chances are they may be met with bias.

Clinical encounters are not the only place people with chronic conditions can be met with judgment and stigma. Not only do they sometimes experience it from their physicians, but from peers as well.

The Pervasive Issue of Judgment on the Internet

The anonymity of the internet allows people to share more than they normally would offline, but with that anonymity can also come cruelty. The internet trolls (those mean trouble-makers on the internet) often feel a sense of power behind their screen and keyboard. On the positive side, people who might otherwise feel voiceless in the real world feel that behind the computer they can connect to others and share in a way they can’t elsewhere.

So, while anonymity makes it easier to communicate one’s judgment harshly, it also provides an opportunity for people in online communities to share stories they wouldn’t share elsewhere, thereby bridging the gap of understanding and mitigating judgment. But, how?

Stories Are Powerful

A good story can evoke serious emotions and help us to see the world through the eyes of the storyteller. Stories give us a different perspective, seeing a situation in a way we might not have been otherwise able to comprehend.

In online health communities, thousands of people open up and share their stories with the community at large. This, in turn, validates so many others, letting them know they are not alone in their struggle and that someone else is out there going through exactly what they’re going through. These stories can also shut down the trolls. Perhaps because it’s harder to judge someone when you hear their story and get a sense what life is like for them.

Physicians and medical professionals have recognized the importance of storytelling in medicine. Rushed clinical encounters involve charts and lab results; however, without including a patient’s story in this encounter, it’s easy to miss the full picture.

To quote internal medicine-pediatrics resident Ben Oldfield: “Illness scenarios from real patients are so powerful that in addition to eliciting empathy they can also entirely alter the way the patient, physician, and society perceive the condition and care. Honoring the power of these narratives can help us not only ally with our patients but understand the social context — and stigma — of disease.[2]

Storytelling and the power of stories are becoming involved more and more in physician education. The American College of Physicians, the nation’s largest medical-specialty organization, has recognized the need to include patients in their annual Internal Medicine meeting. The first annual “In the Patient’s Voice” session in 2014 featured a person living with muscular dystrophy sharing his stories of life with a progressive condition and his personal experiences in healthcare.[3] He detailed the highs and lows of his innumerable medical encounters and talked about the effect they had on him and his family. Having been lucky enough to attend this session, I saw, first-hand, how powerful stories are in healthcare. The room of physicians and medical professionals was moved to tears, many thanking the speaker for reminding them why they entered the medical profession.

Choose to Hear Someone’s Story

In his essay “This Is Water” and his renowned commencement speech at Kenyon College in 2005, one of my favorite authors, David Foster Wallace, talks about ‘the work of choosing’. (Personal note: if you haven’t listened, I’d highly recommend it — well worth the 20 minutes.) Wallace speaks about making conscious decisions about how we think and what we pay attention to. We can CHOOSE to see beyond stigma. We can CHOOSE to learn someone’s history and their story. We can CHOOSE to see the basic goodness in people.

If it’s work to choose, then some of the most worthwhile work will be choosing to hear people’s stories and see them for who they are, and not their condition or what you think their condition represents.

Have I ever unknowingly judged someone or said something accidently hurtful? I’m sure I may have. But, hearing the stories of so many has forever changed my perceptions and forces me to take a deeper look at people. On the worst of days, it might be work to choose to see the humanity in everyone, but it’s meaningful work. It has opened my eyes and provided me with a richer clarity and sense of humanity. While this may all sound like flowery clichés, a deeper sense of humanity is really something the world desperately needs in today’s chaotic times.

[1] Medscape Lifestyle Report 2016: Bias and Burnout. Medscape. Available at: http://www.medscape.com/slideshow/lifestyle-2016-overview-6007335

[2] Physicians Emphasize Importance of Story Telling to Advance Patient Care. UCSF News Center. Available at: https://www.ucsf.edu/news/2012/01/11324/physicians-emphasize-importance-story-telling-advance-patient-care

[3] American College of Physicians Internal Medicine Meeting 2014 — In the Patient’s Voice Session. https://www.playbackacp.com/854-270

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