Published: 10/10/2018

Imagine realising that you have an illness that is treatable yet comes with myths and half-truths, one for which treatment that is often poorly resourced and that is feared by people in your community due to a lack of information.

Imagine being scared to talk about your symptoms or identify you have a problem, even to a doctor for fear of people thinking and treating you as less of a person because of your illness.

Imagine being discriminated against and facing prejudice because of your condition, being told you don’t belong with “normal” people and you have to leave your job or school, that your partner might leave you because you are ill or even worse that you might be shunned by the community at large.

Imagine the stress manifesting physically as you consult doctors, take courses of medication and perhaps have to stay away from home for periods of time to ensure your recovery, dedicating months and years to “getting well”.

Scarily, the issues we just asked you to imagine could be applied to both leprosy and mental health issues alike. Depression and anxiety are major problems amongst people with leprosy, with 50% of cases found citing some form of mental health issue in addition to their physical symptoms.

Today is World Mental Health Day 2018, and the Global Mental Health Summit also takes place this week in London, meaning mental health disorders will be at the forefront of many government, organisations and individuals minds. Many messages of support will be shared via social media and the press, yet very few will be considering the millions of people affected by leprosy and mental health issues together.

While leprosy is curable through Multi-Drug-Therapy and disabilities can be prevented with an early diagnosis, many are found too late to prevent permanent damage, affecting not only their physical health but their mental health. The process of diagnosis can be traumatic and full of fear, with an all too real chance of facing discrimination and prejudice from family members, employers, teachers or even spouses that a diagnosis can cause, along with lessened self-esteem.

Even when leprosy itself has been cured, there are often long term consequences to the individual’s mental health, they may feel inferior or fearful of telling the truth about their now cured condition in case they are no longer seen as viable partners or valuable members of society. Relationships with family may be altered as the disease can force already married children to return to the family due to divorce or affect the families standing in their community. In the worst cases, if mental health is not treated these situations may lead to suicidal thoughts or ideation, or attempts to end life.

One person interviewed during a study in Bihar said:

“I tried to die with the help of kerosene oil by spreading it all over my body and set fire to my body with the help of lighter, but my neighbours come to know about it due to the smell of oil. So, they came and extinguished the fire but my hands and legs were burnt and admitted me to hospital” [1]

In this situation, the physical consequences and the effect mentally would be clear, but also compounded by the social consequences of attempting suicide, creating a vicious cycle.

A recent literature review [2], for our position paper entitled “Building the case for the integration of Mental Health services in Leprosy and Lymphatic Filariasis Programmes”[3], showed that women are more likely to experience mental health issues alongside the physical symptoms of leprosy.

This is due to social and cultural issues where women are often considered less valuable to their family or partner once leprosy has been diagnosed and their ability to access a diagnosis may be limited.

Disabilities caused by the disease may affect their ability to function around the home in supporting the family, while perceived reduced prospects for marriage or indeed being forced to return to the family after a partner rejects the woman due to a diagnosis can lead to isolation or rejection, feelings of inadequacy, hopelessness that build to depression and anxiety.

Komala's Story

Komala is one such example of this, at just 23 she began to experience the physical symptoms of leprosy and after period of misdiagnosis was finally diagnosed privately and able to begin MDT. Komala developed side effects from the drugs which affected her appearance and caused fever and severe pain.

This led to her developing depression and anxiety around her appearance, compounded by her husband leaving her due to her diagnosis. Of this time Komala said:

“I wept bitterly she said. “All I could ask was ‘why should I suffer from this disease’? I had no interest to live…”

In this case, she was referred to the Blue Peter Public Health & Research Centre, who were not only able to cure leprosy but stop the bad reactions to the medication. A year on, Komala’s mental health is improving, however this is a daily challenge rather than something that will be cured in the same way as her leprosy could be.

Komala’s story is familiar to many who suffer from mental illness and leprosy alike. Both can rob the individual of their sense of self-worth, their hope and their belief that others will ever see them as people rather than their illness.

Recently while on a visit to our Blue Peter Health & Research Centre, former Blue Peter presenter Stuart Miles met Komala and was greatly affected by her honesty and how she felt about herself, most notably that Komala felt “she wasn’t beautiful anymore…” and “didn’t believe in herself anymore…”

While leprosy can be cured and treated, this is not a quick process. It can take up to a year of a very rigid treatment to be free of the disease. We can help in treating mental health issues, as in Komala's case by offering counselling and through support groups but more financial resources need to be allocated by governments towards this as part of their commitment to reducing leprosy as mental health issues can directly impact people’s ability to complete the course of treatment.

We feel it is imperative that mental health support is built in to provision for leprosy and LF treatments at all stages. To help people come to terms with their diagnosis, complete treatment and combat the negative self-image that can result, even after being cured of the disease itself must be as important as curing the physical symptoms themselves..

We also feel that mental health support should be available to all who need it, regardless of any physical illness. This World Mental Health Day, we've signed this petition calling on governments, organisations and society to make this happen for everybody and to prioritise mental health in global development.

We invite you to sign too and make your voice heard.

Sign Here

Reference List

  1. Singh, R K. Understanding the consequences for people living with lymphatic filariasis and leprosy and how they impact on their wellbeing in India. 2017
  2. Vlassoff C, Khot S, Rao S. Double jeopardy: women and leprosy in India. World health statistics quarterly Rapport trimestriel de statistiques sanitaires mondiales. 1996;49(2):120-6.
  3. Lepra - Building the case for the integration of Mental Health services in Leprosy and Lymphatic Filariasis Programmes