The most powerful part of our time in Malawi happened a few days in to our time at St John of God Hospital in Liwonde. Chiwondee, the lead nurse of the Community Mental Health Service at the hospital had invited a group of women who had all previously been inpatients at St John of God with Perinatal Mental Health problems to come together.
These women all return to the hospital once month to collect their medication, some travelling great distances by public transport to do this. On this day the women had been asked to collect their drugs but also set aside time to meet us, and come together as a group for the afternoon. It’s the first time that these women connected by their experiences of these conditions had come together as a group and the first time many of them had met each other.
Over our tasty lunch in the staff canteen (fried fish from Lake Malawi, cabbage, rice and chilli sauce) we discussed how to facilitate the session to make it as welcoming and inclusive as possible.
We knew the women would be bringing their children with them and had travelled far so we provided home baking, juice to cool everyone down, and toys for the wee ones (thanks to Bookbug in Scotland). Essentially, there were two staff able to translate for us between Chichewa and English throughout the afternoon. The international language of big smiles, cheeky toddlers and sharing cakes and tea ensured a lovely atmosphere from the start. It was really lovely to sit down for a meeting with cheery babies and toddlers around the conference table! (Perhaps if toddlers were in the boardrooms making the important decisions about the future of the planet we’d be in a better state all round?!)
We did some familiar ice breaker games to find out a bit more each other and were introduced to the younger attendees at the session who were busy playing with the wrapping of their new toys! (All children, wherever you are are, are more interested in the wrapping than the gift it seems). The women shared their stories, their experiences and what relaxes them. Lots of the women enjoy going to church and singing in their local gospel choirs. The youngest woman attending was 17, as she fed her newborn baby, her mother was also in the session feeding her newborn baby too. The fact that this grandmother was nursing her youngest child, as her oldest daughter nursed her new baby of a similar age hit home emphasised how child rearing dominates such a large part of women’s lives in Malawi.
It feels inappropriate and unethical to share these women’s very personal experiences in this public blog especially given how much we all talked about the stigma in Malawian society surrounding mental health. One woman spoke bravely about how she had ended her marriage because her husband said he couldn’t live with someone who had been in a psychiatric hospital.
We spoke honestly about how our families had reacted to our illness and how we framed it ourselves and spoke about it to other people. One thing that arose which may be a good thing for the partnership to focus on is aftercare once women who have been inpatients are back in their communities. The woman spoke about the prevalence of maternal mental health problems in their communities but that these illnesses such as moderate depression weren’t often identified. The women rightly pointed out how broad the spectrum of maternal mental ill health is differentiating between women who were depressed and this was seen as normal, to women who were identifiably ill and unable to carry out their usual duties in the house to women who were written off as ‘mad’ and at crisis stage presenting with severe psychotic symptoms. They discussed how they act now when they think that a female friend of family member with a child might be showing signs they are unwell…..how do our own experiences colour how we now perceive other women around us?
A big theme from the discussion that arose was the strong role religion plays in Malawian society and how for many of these women their first port of call were religious figures and people in their local faith communities. Some of the woman felt that praying had really helped with their depression and anxiety, others had their psychotic symptoms interpreted as witchcraft and it delayed them getting to the medical treatment they needed. We have a lot to learn about this intersection of faith and health in Malawian society and the extent of the impact it has on the women’s lives.
I was really delighted to hear the women in the meeting say that they would like to come together again as a group of people with lived experience and that they would begin to do this monthly to coincide with them collecting their prescriptions. We discussed the practicalities of this, they agreed that they were happy to meet at the hospital in the first instance as it was somewhere they felt safe and supported. The travel costs of this can hopefully be covered by our THET grant as well as refreshments for the women, its essential that costs aren’t a barrier. One woman who attended our session had a ten hour round trip to come from the border of Mozambique. Her journey involved a hot squashed mini bus and riding on the back of someone else bicycle with her baby.
Some of the things that the group identified that they would like from their group are:
- ’Relaxing activities’ with a positive focus so ‘socialising’, ‘playing’, ‘forgetting the problems’
- Support from a mental health worker to further understand their illness, manage their recovery, share coping strategies
- Time to do something creative and therapeutic that they could also sell to bring the group some income
- A safe space to talk, time to share experiences, maybe collect other women’s stories to shares so women feel less alone
- Some skills development to feel more confident to raise awareness
They also discussed the need to build awareness at community level, could there be small informal support groups for women that women could be signposted to from their doctor? Would women be happy to identify themselves as having had a mental health problem or could this peer support be incorporated into something else to reduce stigma. At this point I spoke about some of the things that the Change Agents have done in Scotland to strengthen women’s voices in this area.
As the women left the session chatting amongst themselves and their lively little ones left a trail of cake crumbs down the stairs of the hospital there was a tangible mood of optimism in the air. Realising that we shared particular emotions and struggles despite the 5300 mile difference felt uplifting and important. The first step is helping women to realise that they are experts by experience and have a powerful collective voice. Organised peer support can have a hugely positive impact on the emotional wellbeing of women building connections and building confidence. It’s essential that women with lived in experience are actively involved in shaping mental health services to ensure it is meeting women’s needs. This may only be the beginning for this group but there are big possibilities. I look forward to hearing how their second meet up goes and am hoping to Skype in to say hello to everyone!