Engaging with the modern stigma of the ancient disease of leprosy

Sonali Biswas

March 20, 2017

I left for Ecuador thinking two months would be enough to make an impact in a community with leprosy. With centuries of stigma, leprosy proved to be not only a physical disease, but also a social disease that could only begin to be understood in eight weeks time.

Overwhelmed by the unanticipated hours of traffic that lay in front of me and dehydrated from the Ecuadorian sun on a crowded bus, I quickly began to doubt my own preparedness for DukeEngage. Through my service project, I would be working with people in the urban city of Guayaquil who had had leprosy, and were now suffering from the symptoms. Prior to departure, I spent weeks researching leprosy, preferably known as Hansen’s Disease to avoid the stigma traditionally associated with the disease. I even read up on Ecuadorian culture, ambitiously trying to pinpoint how my goals could be accomplished in the 8 weeks we had there. Unbeknownst to me at the time, this initial impediment would be the first of many experiences that challenged my perspective on how short-term service projects can grapple with the complex social determinants of disease.

As I walked through the gates of the Damien House foundation on that first day, my fellow volunteering partner and I were welcomed by the residents of the clinic with open embraces and wide smiles. Walking through the foundation, seeing the patients making hammocks for sale, or painting canvases to decorate their rooms, I was surprised to find the thriving community within the foundation’s concrete walls. Even though all residents suffered from the same disease, each possessed their own unique history and personality. As I spent more time with each resident, the service goals I had developed before getting to know this community suddenly seemed narrow-minded and inflexible in the face of the diversity of this population. My initial planning unintentionally imposed my own objectives on this community, considering them as merely victims of a disease; after observing the multidimensional complexity of their world from within, I sought to better understand how I could integrate into their existing lifestyles

While I knew I still wanted to have some kind of impact, I found myself without any clear path forward to what that impact could be and how I could achieve it. Not wanting to interrupt the already-busy staff, my partner and I began to investigate the clinical experiences of both the resident inpatients and the outpatients, the latter being those who have not lost their independence due to the disease. From the outpatients, I first began to understand how my clinical understanding of Hansen’s Disease from journals was significantly different from these people’s experiences in society. I previously understood Hansen’s Disease from a scientific perspective as a neglected tropical disease, meaning it disproportionately affects those in low-resource communities who have extended exposure to the bacteria Myobacterium leprae. These patients, however, perceived their experience entirely in the social context of how their communities perceived them. To them, Hansen’s Disease was a curse with ancient biblical ties. In their highly religious communities, their familial and professional relationships were affected by how “lepers”, as they were called, historically had to ring a bell when they entered public spaces, so that the community could hide from contagion. Abandoned by their communities, only after coming to the Damien House did the outpatients realize that their affliction could be easily combatted physically.

Curing the patients of the bacteria, however, did not cure them of the burden of the disease. Physically, the sequelae left patients with significant scarring, reduced nerve sensitivity, and amputated limbs. Financially, the bus ride they took to the clinic each day, rarely more than five dollars, was expensive because they were no longer able to work, and physically difficult to navigate with their condition, factors that I in my privilege never had to consider on the same bus ride each day. Those not from Guayaquil struggled even more travelling from rural communities, where treatment was unavailable despite the highest disease burden. I assumed that the lives of the permanent residents would be significantly better than those of the outpatients due to access to 24/7 care, daily meals, religious services, and the freedom to pursue hobbies such as sewing and making hammocks to sell to the community. The relationships I fostered, however, revealed their desire for someone to talk to—a willing ear, an outside friend, or even a psychologist. Others wanted events to break the monotony of their schedules that did not extend past the walls of the center. Unable to work, many simply desired to regain their independence. While these people were extremely optimistic about their situation, citing their faith as their main motivator and coping mechanism, I felt increasingly helpless and frustrated. This was the first and certainly not the last time that I realized that the issues that were most relevant in these patients’ lives were the ones I was incapable of solving, especially in our short two months time.

Given my time restraints and ability as an undergraduate student, I believe that the most important role I could play was that of a companion. Unlike how I had initially anticipated, my academic knowledge and my research experience were insufficient to truly connect with this community. Together, the patients and I played dominoes, watched telenovelas, and painted canvases. My partner and I eventually began a daily exercise class to help patients regain their independence, and created a guide for future volunteers to sustain our work. We painted a mural on a blank wall with the patients in a popular socializing spot. Most of all, we prioritized validating the individuality of each patient through one-on-one conversation, games, and activities.

As I spent each day experiencing the wealth of diversity among the residents while volunteering throughout the two months, I became frustrated by those who visited the center for days at a time. Often, these groups had come to the center to perform a day of service but often ended up nervously observing and taking photos of the patients as if the patients were exhibits. To me, these visitors lacked the time needed to see past the disease in each patient and to the commonalities they shared. However, as my time came to an end, I began to see myself as I saw those tour groups. Like them, I arrived at the clinic with the same well-meaning desire to make a positive impact. Like them, however, I was leaving the clinic behind, unaccountable for the repercussions of my absence. I felt pain at suddenly leaving the relationships from which I had learned so much. I felt helpless that I could not directly help these patients much after I left. While students would be returning to the foundation the following year from Duke, I struggled to find my own role in sustainability. I felt guilt at my privilege of being able to escape the reaches of this disease and return to my own life, while the patients never had a similar option. I felt frustrated by my own naiveté of thinking of two months as a sufficient time to make a meaningful impact.

Most of all, I felt grateful that these people allowed me into their lives as an outsider to accompany them during their meals, church services, and craft-making that constituted their daily lives. From this experience, I have come to greatly appreciate the WHO’s definition of health, where health is “a state of complete physical, mental, and social well-being, and not merely the absence of disease or infirmity.” In the eyes and spirits of the patients with one of the most stigmatized diseases of the world, I learned how to see humanity and the power of hope. With the stories I heard from patients, I discovered firsthand how people’s social environments are as relevant as and often determine their physical wellbeing. Above all, I learned that eight weeks with even the best intentions could never remedy a problem that has spanned centuries. Nevertheless, having the privilege of any amount of time and resources should motivate oneself to mindfully take the first steps to making an impact.

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