SASAKAWA MEMORIAL HEALTH FOUNDATION
Japanese
Character sizeLargeSmall

WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

REFLECTION: Who Do I Tell?

Mathias Duck relates how he came to terms with a diagnosis of leprosy.

photo

In January 2010 I started working as a pastor/chaplain at a leprosy reference hospital. I learned a lot about leprosy. My co-workers explained and taught me many things: leprosy is a relatively simple disease, but also a complex problem.

Although many people believe that it will cause a person’s limbs to fall off, leprosy actually manifests itself by patches on the skin with loss of sensitivity. While science says that 95% of people are immune to it, people respond with outrage, shock and fear to someone with the disease.

The WHO distributes effective drugs against leprosy and, once treatment begins, the patient is no longer infectious. Nevertheless, even after completing treatment, people affected by leprosy still have to face rejection, discrimination and stigmatization. Although there can be serious physical consequences for people affected by leprosy (especially those not diagnosed and treated in a timely fashion), the social consequences are often the most devastating.

WHAT IF?

If I had leprosy, I asked myself, whom would I tell, given that most people have horrific notions about the disease. The advice we gave to people affected by leprosy was to share their diagnosis only with those who were going to support them. Some patients told us that none of their family, friends, relatives or neighbors knew that they had the disease. It was their secret and sharing it could mean that they would be rejected, discriminated against and in some cases abandoned by family and friends.

In many cases, religion has perpetuated the stigma of leprosy, mostly because some sacred texts are misinterpreted. At the hospital, we tried to follow the example of Jesus, who touched, healed and empowered people on the margins.

photo
A church service at the Hospital Mennonita Km 81

In October 2010 I felt that two fingers of my right hand were asleep. It also felt like the skin was shrinking and I felt slight discomfort stretching those fingers. This continued for two weeks. I knew this could be a symptom of leprosy, though not very common, and I wanted to know the truth. If it was leprosy, I would have to face it.

I went to the doctors at our hospital. They examined me and found that the ulnar nerve was swollen in my right elbow. They explained that, in their experience, this was related to leprosy. My body had detected leprosy bacilli in the nerve and attacked it. I was put on a six-month course of MDT and a six-week course of corticosteroid treatment.

I felt that people would judge me and treat me differently if I told them.

The leprosy diagnosis caught me off guard. I did not know whom to tell or how. One of my colleagues told me (I suspect it was intended as comfort) that he was convinced I did not have “that”. The medical staff handled my case very professionally. I shared the diagnosis with my wife and my parents and they supported me.

I wanted to share it with more people, with friends and relatives, but I felt that this was a hard thing to do. I felt that I would expose myself and that people would judge me and treat me differently.

FEARS UNFOUNDED

In retrospect, I can say that my fears were unfounded, as I have not perceived that anyone has treated me differently, knowing that I had leprosy. I consider myself fortunate in this regard, compared with most people affected by leprosy that I know. Also, I consider myself lucky that I was working in the right place when the symptoms began and that I suffered no lasting physical consequences.

We always say that leprosy is a normal disease, just like any other. Therefore I felt that I should live the speech and talk about my leprosy just as other people talk about their diabetes or high blood pressure. I must admit that it took me quite a while to get to this point, however.

This experience has helped and enriched my work. I can support patients more empathically and focus efforts to combat stigma and discrimination. I am inspired by Jesus’s example and his mandate to “cleanse lepers” (Matthew 10:8). This implies working for the integral wellbeing (physical, emotional, spiritual, economic and social) of all people who are marginalized by society.*

AUTHOR: Mathias Duck

Mathias Duck is a pastor/chaplain at Hospital Mennonita Km 81 in Paraguay. The original version of this article was posted on the author’s blog in January.

FOOTNOTE

* A practical step you can take to combat discrimination and stigma is to watch your language. The word “leper” is derogatory and discriminatory. No one wants to be labeled only by the illness or condition he or she has. Please note that I use the term leper, only in order to refer to the stigma, but never referring to a particular person.