A 5-point manifesto for addressing leprosy’s mental health crisis
There is no one working in leprosy today who would argue that there is not a tight and painful link between a leprosy diagnosis and mental health challenges.
Any disease that can lead to chronic long-term complications carries a risk like that, but leprosy even more so. With so much stigma surrounding the disease, it is little wonder that negative thoughts squeeze their way in alongside your diagnosis.
Here we would like to suggest a five-point manifesto for solving the mental health crisis. This is not to suggest that there are no other ways of approaching this crisis, but for us these are the five essentials.
As with anything else with mental health, open conversations are the best way forward, so if you think we have missed anything, write to us at newsletter@leprosymission.org and we’ll include your suggestions in the next issue of The Leprosy News.
Photo credit: Fabeha Monir
At The Leprosy Mission, we have moved away from the term ‘mental health’ to describe the crisis we are seeing amongst our patients and project clients. There are two reasons for this.
Firstly, ‘mental’ is a word that conjures up negative connotations in some cultures. There are field teams in The Leprosy Mission who will not use the term ‘mental health’ because it is either unfamiliar to the people they serve, or it causes alarm because of the stigma around the word ‘mental’.
The second reason we avoid the term ‘mental health’ is because it mostly results in our focussing only on supporting people experiencing painful emotions and feelings. Such care and support are, of course, essential. But if we are to enable people to live well, it is also important that we are doing all we can to address the root causes of their distress.
For example, if you are ostracised by your neighbours or fired from your job because of leprosy stigma, if you struggle to access clean water and regular food, if you are finding it hard to look after a family while living with chronic health problems, do you have a mental health problem? Or are you struggling with your inner wellbeing?
At The Leprosy Mission, we use the term ‘inner wellbeing’ to better describe what is otherwise termed as a ‘mental health’ challenge.
Inner wellbeing refers to an individual’s mental, emotional, social, and spiritual state – how they are feeling, and how well they are able to cope with their day-to-day life, psychologically and socially.
Inner wellbeing is our suggestion for capturing and then addressing this challenge more holistically. With this definition, we are confident we can better serve our project clients.
It is important to recognise that there will always be persons affected by leprosy who have a serious mental health problem that may have been a pre-existing condition, or may be one that develops after leprosy. These individuals, like all those we wish to support, will benefit from someone listening to them, but they will also require medication and/or counselling.
Inner wellbeing challenges, however, do not need interventions like these. Often, the most effective intervention is to give a person your time and attention.
Photo credit: Sabrina Dangol
There are people in leprosy programmes the world over who have been (perhaps unwittingly) leading the charge against the inner wellbeing crisis by sitting with people and listening to them, being generous with their time, and making a person feel heard and loved.
When we say ‘listen to your instincts’ we are saying that there will be many days when there are lots of things to tick off your list at work, but on some of those days you might see a person who is upset. Your instincts will tell you to go to that person and care for them, but your professional responsibilities will tell you that, if you do, you will not finish your tasks for the day.
You should listen to your instincts and give your time generously. To make that working culture possible, we need to have an acceptance throughout our sector that it is okay if some tasks are missed if they were missed because we were giving our time to care for a person. No doubt there are many places where that culture has long been present.
There is rightly a big push for measurement and better data in the leprosy sector. That approach is crucial to interrupting leprosy transmission and providing good-quality services to care for people with impairments.
And there is a place for measurement within the inner wellbeing sphere of our work too, but it should not come at the exclusion of all else.
Questionnaires and other tools that screen for specific mental health problems may be useful in some contexts, or where there may be concern that a person is in need of referral to specialist services. It must be remembered, though, that such tools are designed only to diagnose: using them with people who are struggling with difficult emotions does nothing to ease their distress. If they are used, it is, therefore, essential that this is done alongside the provision of care and support.
Nor can we stop or limit our inner wellbeing interventions because it is hard to score their efficacy with data and numbers. Quantitative data will never tell you the full story about a person’s inner wellbeing.
If we need to measure this work, we have to do it through qualitative data. We need to look to stories of people who are happier and more content because our teams did something that will always be hard to track, like sitting in someone’s home on a field visit and chatting for a while.
It is through qualitative data that we know our partners in Sri Lanka, KKM, are leading the way in this field. They use arts-based therapies such as drama therapy to help people work through their problems. This means staff work with patients to tell stories and act them out.
They also use taste as a therapy method. A person will bring a very bitter ingredient with them to a group session. They will think of all the bitter moments in their week, associating them with their bitter ingredient. They then cast their bitter ingredient into a pot of water before washing their hands in the water. The water is then put on to boil and the bitter moments evaporate with the steam.
We know these techniques are working but not because they are easy to measure and track. We know they are working because of the anecdotal evidence of lives transformed.
The fundamental truth about all of this – as with so much else in life – is that this work requires better funding. If we are not intentional about that, we will not see changes that bring real benefits.
That of course means more funding for projects that work directly on inner wellbeing. But it also means making inner wellbeing a part of all our projects, much in the same way that we would with safeguarding.
If you are writing project proposals, are you saving a budget line for inner wellbeing interventions? If you are funding projects, are you asking your implementing partners to think about how inner wellbeing features in their project?
Are we asking major funders of development work, particularly governments, to make mental health considerations a precondition of funding?
An intentional approach to funding like this is the best way to ensure that inner wellbeing is not an afterthought. After all, it is rarely an afterthought for the people the funding is intending to support.
We have saved perhaps the most important one till last. Hopefully, because it goes without saying these days.
If we want to solve an inner wellbeing crisis within the communities we support, we should be talking to people in those communities to help us define the problem and develop solutions.
Our research teams in India and Nepal are conducting research within communities to do exactly that. Findings like these move us much closer to solving the problems we want to address.
Another important thing to note here is that The Leprosy Mission is working on its next global strategy at the moment. We have been intentional about consulting persons affected by leprosy, both at the grassroots level and with leaders of Organisations of Persons Affected by Leprosy. If, when we have finished the process, we discover that one of the outcomes of this consultation is that inner wellbeing is a priority issue, then this gives us the right mandate to move funding and interventions in that direction. It is a mandate that we are more likely to get if we consult with persons affected by leprosy.
Whether at the hyper-local or at the global level, listening is always going to be central to getting this right.
A manifesto written in partnership with The Leprosy Mission’s Inner Wellbeing Working Group
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