Monthly profile of an inspirational Peer

Jane – Uganda’s first peer support worker for mental health

In her early life, Jane followed a calling to become a religious nun, taking up her training after completing her secondary education. It was 1978, when, only days away from taking her final vows, Jane became unwell.

Jane was observed by her religious sisters to be moving from one place to another, with no purpose. She slept little. She was talking things that were not combined. It was so concerning that Jane was taken to Mulago Hospital, where she was referred to Butabika.

Jane stayed in Butabika for 6 weeks. Unfortunately, shortly after her discharge, she relapsed and was readmitted to hospital. Her mental health problems, diagnosed as bipolar disorder, had interrupted her training and her dream of becoming a nun would no longer be possible.

Jane moved back to her family home where she stayed with her parents. Although she felt very bad that she could not become a nun, she reconciled herself, saying “many are called, but few are chosen”. Next, Jane set her sights on building her own family. She prayed to find a husband, and after 4 years her prayers were answered.

Jane remembers she was walking to church with her brother when she heard somebody approaching her. This person touched her back, and when she turned around it was a man who said, “I want you to become my wife”. Jane has always been open about her mental health challenges. She said to him she is a patient of Butabika Hospital. This was not a problem as her husband-to-be believed mental illness could be treated. Jane felt accepted by him.

A short while after their introduction ceremony, Jane had her third relapse. This was her last. Since then, she has enjoyed a happy family life with her husband, children and grandchildren. Indeed, a number of years later, Jane began working as a seamstress at Butabika Hospital. With her own lived experience, Jane could see that patients at Butabika needed support from someone with a similar sickness.

So, Jane started to talk to patients and their families at the outpatient department and occupational therapy department. She did this voluntarily, alongside her work as a seamstress. Jane used her own personal experience to support her peers – talking about her recovery, taking medication and the importance being self-reliant, earning money and staying occupied. Jane also promoted self-acceptance – a key part of recovery. Jane was motivated by the gratitude of patients and their families. She could see her work was really making a difference.

For the first few years, Jane worked independently. She had no formal training and was not paid. From 2004 onwards, she began receiving support from clinicians at the occupational therapy department. Then, in 2012, she was given training alongside others as part of a funded programme. This programme helped her to support peers in different ways, from the ward to their homes. Although this presented some challenges, including managing the expectations of her clients, it didn’t stop Jane. She continues to work as a peer support worker today. In fact, some of those she supported are now peer support workers themselves. Others are married and have children and are enjoying life in recovery. She is rightly proud of this achievement

Jane has now been 36 years without a relapse, 20 of which she has spent supporting her peers. She believes her peer support role has helped her maintain her own recovery – through providing employment and a sense of purpose. She has even been featured on a national TV programme with the Director of Butabika Hospital.

Jane has been open about her mental health challenges from the beginning. She says “For me I don’t hide my sickness. People see me – they say, are you the one with the mental illness? I reply, Yes, I am. I am on treatment and I am in recovery”.

This way, Jane fights mental health stigma in the community and wherever she is. So many people have benefited from her advice, support and wisdom. Jane can be considered Uganda’s first peer support worker for mental health. Now, she is a member of Peer Nation, a service-user led organisation. Being part of Peer Nation gives Jane the opportunity to spend time with and support her peers, as well as contributing to projects such as the monthly outreach programme with the community psychiatric nurses.

Jane has a few key pieces of advice for recovery that she wishes to share:

  • Mental illness can be treated and recovery is possible
  • Accept yourself for the way you are
  • Follow the advice of doctors
  • Seek employment, so you are useful and have independence
  • If something has stressed you, tell somebody, don’t keep it in your heart as this may cause relapse
  • Be hopeful
  • Fight stigma

She also wants to thank her husband, her children and other family members who have supported her, her benefactor and his family, the staff at Butabika who have loved her and not stigmatised her, members of the community who have supported her work as a tailor, and her fellow peer support workers.

After so many years of hard work, mostly voluntary and unpaid, you might think Jane is considering retirement. This is not the case. She says, “If I am able, I will continue”. Although she was not able to fulfil her youthful ambition to be a nun, Jane has followed a different calling in life – supporting those with similar challenges to herself and fighting mental health stigma every day.

Jane is also a tailor of Gomesi and school uniform. If you would like to support Jane through her tailing, please contact Peer Nation and we will share her contacts.