What does healing really mean in a disease as complicated as leprosy?

A reflection from Dr Joydeepa Darlong

What does healing really mean in a disease as complicated as leprosy?

When I (Dr Joydeepa Darlong) was practicing medicine, my patients would always ask me at the end of their treatment ‘am I healed?’ They had completed 12 months of MDT treatment and we had stamped them as ‘released from treatment’, and so I would answer ‘yes, you’re healed.'

Then they would ask, ‘will I have any more problems later?' If I said yes, they would ask why their treatment was being stopped and if I said no, I would be lying. It was a dilemma.

For us as clinicians and patients, it prompts the question: what counts as healing? Bacteriological cure is what clinicians consider as healed, but patients don't think like this. They want their impairments repaired and they want a life without pain.

Our patients were often not happy because they wanted to go back to how they were before the disease. There was a mismatch between their expectations and what we were able to deliver.

Because of this, there was no straightforward answer to what healing looks like for a leprosy patient.

Learning from other diseases

At TLM India, we wanted to understand this better, so we looked at what healing looks like in other diseases by looking at the available research. We looked at tuberculosis, diabetes, and HIV. These are diseases that are like leprosy in that they are chronic, require continuous monitoring, and medicine taking.

What we learnt is that healing was not something that was achieved at the end of a process but was something that arrived or disappeared at different moments of the journey. There were days when they felt healed and days when they did not feel healed.

There were lots of factors that helped people to feel healed:

Support systems from family and friends was a major determinant. People who had happy surroundings and friendships could cope better
Economic independence or a lack of income and job opportunities combined with healthcare costs played a role
The impact of illness of mental health changed perceptions of healing
Faith in God allowed people to surrender the things beyond their control, no matter what a person's religion was. They felt better giving this to God and it allowed them to vent and still feel heard.

A five-dimensional understanding of healing

Through our research into other diseases, we came across three dimensions to healing: the physical, the psychological, and the social-relational. As we worked, this became five dimensions, adding socio-economic and spiritual.

We wanted to understand whether these five dimensions could be applied to leprosy so we did interviews with people stratified into six groups: people with patches, no patches, type 1 reaction, type 2 reaction, ulcers, and impairments. Then we interviewed front-line workers, medical assistants, physiotherapists, clinicians, and people working in policymaking roles in the government health system.

Through our interviews we found that all of the patients' reflections on what healing meant to them fitted within the five dimensions we had laid out.
From healthcare providers, we saw that they knew there was a limitation in the kind of care they could give. They knew that the cure - MDT - was not enough, but there often wasn't much else they were equipped to do. They knew more needed to be done to talk about stigma, accessing social protection, and mental health, but they did not know how to make it happen.

Why is spirituality so important?

We originally did not include spiritual healing in our list of dimensions to consider, but a consultant told us that we should expect it to come up. It turned out she was right, it came out in the research in a big way.

At TLM, we talk about how we provide care and treatment, but it is God who gives the cure. That's how people talk about healing in India, which is a very spiritual country.

When we bring the spiritual into the question, it brings hope and hope is something that is often lost in patients. That hope allows us to walk with them through the journey of healing. If there is something that can't be explained, the spiritual angle allows them to do that. They say ‘if this is God’s will, I will bear this, I will have my support systems'.

Hope goes a long way in healing. When you speak to someone to give them hope - not a false hope, true hope - we send them back in peace. It could be a momentary hope, but at least it's something. The spiritual angle is all about that hope. We tell them that we have seen many others come out of these difficult situations and then we tell them we will pray for them.

Our research showed a clear link between hope and faith in the Divine and a sense of healing.

New guidelines for understanding healing in leprosy

We took what we had learnt from our research into other diseases and our interviews with leprosy patients and practitioners and we created guidelines that would guide us through what this process looks like.

We consulted persons affected by leprosy on the creation of these guidelines and they requested that the guidelines should speak to both patients and healthcare providers. They wanted the guidelines to help them understand the challenges they would face, how they can seek support, and how they can get themselves out of difficult situations.

A timeline for us to follow
We broke the guidelines down into different stages of the journey. If a patient first arrives with their leprosy diagnosis, you're not going to start by talking to them about complications, you begin only with MDT. At different stages of the journey, a person needs to hear only about the most relevant things.

So the guidelines break this journey down into the first appointment, the six-month mark, the nine-month mark, the 12-month mark, and then beyond this. The guidelines show people what to expect at each stage of the journey and at each stage this is broken down according to our five dimensions. There are also case studies to give encouragement.

Click above to read the guidelines, designed for both patients and healthcare providers

The future we hope these guidelines will have

We developed these guidelines in collaboration with persons affected by leprosy and practitioners, and then we did a day-long consultation with people who represented the other diseases we considered - HIV, diabetes, and TB - so we could get their feedback, too. We're confident that these guidelines are now giving us a really solid framework to help both patients and clinicians understand what healing means.

Our hope is that this is something that could be applicable globally. Our scoping review of other papers covered many Low-and-Middle Income Countries, with most of our data coming from Asia and Africa. These concepts we are wrestling with are not new, they have been shown to work in other contexts and are practiced elsewhere in other diseases. We just need to scale this up in leprosy.

Putting power in the hands of patients

We believe these guidelines will help patients to seize power to demand certain services and expectations about the kind of treatment or support they will receive. This should stop patients from going ‘doctor shopping’ because they are unsure of the treatment they are receiving.

In the future, we want these guidelines to become a checklist for both patient and clinician to use, something that is received when MDT is first prescribed. We're starting by discovering whether this is something that could be included in clinicians' training curriculum in India. The health service here has shown some interest already. It may even be adaptable to other NTDs, particularly those that are stigmatised skin conditions. We also plan to include this in WHO's upcoming review of its treatment guidelines.

Citation: Darlong J, Kim J, Goswami S, Tyagi C, Karthikeyan G, Charles MVS, et al. (2026) Understanding healing: A comparative analysis in chronic diseases with leprosy—A scoping review. PLoS Negl Trop Dis 20(3): e0013748. https://doi.org/10.1371/journal.pntd.0013748

We hope these guidelines are going to provide a framework for patients across the world to come to terms with what healing is going to look like for them amidst this complicated, ongoing, and confusing disease.

Front cover photo credit: Sabrina Dangol