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A path towards inner wellbeing and good mental health for persons affected by leprosy

A photo of a mother in Sri Lanka, whose son has been diagnosed with leprosy
© Mahinthan Someswarapillai
Profile photo of Lorna Murray

Lorna Murray is a member of TLM’s Inner Wellbeing Group. The below is adapted from Lorna’s proposal for the TLM Inner Wellbeing Group.

Living with leprosy has a negative effect on mental health. Physical symptoms and the pain they can cause, the limitations caused by disability and the prejudice that is so often experienced can impact in a negative way upon thoughts and feelings. Losing a job or being denied the opportunity for marriage can result in anxiety, or in feeling lonely or fearful about the future.

At The Leprosy Mission we are developing new ways to tackle this problem and improve the inner wellbeing of persons affected by leprosy.

Understanding relationships is central to our work towards inner wellbeing

Enabling and encouraging wellbeing means being aware of the relationships that individuals have within their family and in the wider community, and of the ways these relationships provide, or fail to provide, companionship and support.

Even people living free from disease or disability are unlikely to feel that they are living well when going through painful times such as bereavement or loss of employment. Supportive relationships are crucial to our wellbeing at such times: how much more this is true for people affected by leprosy who must face these, and other pains, while also coping with disease, disability and prejudice.

Knowing that there are people around us who care about us and are willing to support us can not only prevent us from “languishing” but enable us – even within limitations – to flourish.

For each person we encounter who is struggling with inner wellbeing, we need to understand their support networks and provide more support, if that’s helpful.

Mental wellbeing changes over time

Importantly for our plans to improve inner wellbeing, it is important to understand that mental health is on a continuum and that we should not divide people into those who ‘have mental health’ and those who are ‘mentally ill’.

Just as people “move up and down” between languishing and flourishing, so they “move between” being more or less mentally healthy. When we understand this and work this understanding into our practice, we are better able to help people to improve their wellbeing.

While a person might have no history of mental health problems, that can change over time.

There is, therefore, the need to ensure that everyone is given the opportunity to talk about how they are feeling. Time to listen is a crucial part of holistic care. Simply “being there” without busily “doing” is helpful.

As we consider how best to improve inner wellbeing, it is important to ensure that, within all the practical activity of “doing”, there is opportunity for this time to listen. It might be that, along with increasing awareness among all staff of the benefits of making time to listen, some staff are selected for training in listening skills. Some projects and hospitals may be able to appoint counsellors or trained listeners whose primary focus is inner wellbeing.

For some people, however, there will be times when such empathetic listening may not be enough. Where anxious feelings threaten to overwhelm a person, or when struggling to cope spirals downwards into depression, medical treatment will also be required.

Knowing when and how to provide serious mental health interventions

For people who are, or become, mentally ill, specialist help from mental health services such as a psychiatric hospital or a community mental health team is required. In our aim of holistic care, it is important that good links with such services are developed, wherever these are available and accessible.

Crucial to this aspect of our work is an awareness of the distinction between the signs and symptoms of mental illness, which require specialist treatment, and the stresses, fears, anxieties and emotional difficulties that are so frequently felt because of the experience of living with leprosy.

Our teams should know when someone needs a referral for specialist help and how to make that referral.

Empowering those who have been there before

As well as training our own teams to listen and to provide mental health support, we can also train people affected by leprosy. Their own experiences are invaluable in helping people who are treading the same path.

This feeling of being valued and useful, of having a purpose and being able to contribute to the wellbeing of the people around us is something that encourages our own wellbeing, even as we face our own problems, pains and difficulties.

Wellbeing can also be found when we know ourselves to be valued and valuable, when we feel ourselves to be part of – and welcome in – the community around us. Wellbeing means recognising that “I belong in this place” and that “my life is important to you”. Wellbeing means sharing the ups and downs of life with friends. Wellbeing means believing that life is worth living: that life is good

Although, undoubtedly, the journey towards wellbeing for people affected by leprosy includes the vital aspects of care and treatment provided through TLM hospitals and projects, none of this, without caring relationships, can truly transform lives.

Here are a few ideas for how TLM and other organisations can continue to grow inner wellbeing amongst people affected by leprosy.

  1. Encourage, at local, country and international levels, ongoing discussion amongst all staff about wellbeing and holistic care
  2. Invite groups of people affected by leprosy to share openly with staff (and, if done as part of a study, with researchers) their ideas about how their wellbeing could be improved
  3. Identify, in all projects and hospitals, what is already being done that has a specific focus on inner wellbeing
  4. Share details of all identified in 3., noting what has not worked well in addition to actions found to be helpful
  5. Identify the locations of specialist mental health services, and note whether these are accessible in person, or by telephone, or via internet support such as tele-psychiatry
  6. Develop good working relationships with places identified as in 5., to enable the sharing of information and advice, and to make appropriate referrals
  7. Identify – where possible with help from specialist mental health services and/or other local support groups – appropriate training materials for courses on basic listening skills
  8. Enable selected staff in each project and hospital to be trained as “listeners” by using the materials identified in 7.
  9. Encourage staff in all departments and areas of work to be aware of the benefits of supportive listening, and to make time in all their interactions for such listening
  10. Identify appropriate people affected by leprosy in each hospital and project to receive training in listening, so that they can offer “peer support”
  11. Identify appropriate methods of assessing the effectiveness of each recommendation