Learning from lived experience: James’ story

James’ story starts when he returned to Uganda, after studying for a degree overseas. He was a high-flying student with good grades, but after graduating he found it difficult to find employment. Somehow university hadn’t prepared him for this challenge. He tried to get a job, then his relatives tried to help, but they were not successful. At this time, James started to find that strange ideas were flowing into his head. How can I provide for myself? How can I give back to my family? How do I go through this? The number of thoughts began to overwhelm him.

Whilst James grappled with these thoughts, he travelled with his Father to visit relatives in the village. Increasingly, he began to feel afraid, he didn’t feel safe in the places he was moving to. When he returned to Kampala, he could not settle. It was then, he recalls, his illness really took hold. He was somehow disturbed, not normal, he says. James did not know at the time that he was beginning to experience the symptoms of a mental illness.

Looking back now, James remembers how he started to see importance and significance in small things, making associations that weren’t true. He was preoccupied by the idea of a mass migration of people to a far-away place. He tried to imagine this place and drew maps. He kept a book where he wrote down his ideas, because his memory was so poor at the time, he was worried he would forget them. The ideas made sense to James, but to others they made no sense at all.

James was not violent, but his family were so worried they locked him in the house. Despite this, he would sometimes get out and wander on the streets. He remembers losing a shoe, approaching people he did not know, disturbing others. One time, people thought James was a thief. He was badly beaten. Luckily, he was rescued by a woman who knew him. He says, “this was my worst moment”.

All this time James’ family were trying to seek help. His behaviour had caused a rift to emerge, with everyone blaming each other. They thought demons were causing him to behave like this. What they didn’t know is that it was a mental illness, and it was nobody’s fault. They first sought guidance from their religious leaders, who provided James spiritual support he still values to this day. However, as time went on and James did not improve, the family resolved to bring James to a medical doctor.

James now remembers being taken to visit a family member near Butabika Hospital. From here, he was taken to the clinic and then admitted to the hospital. He spent almost 2 weeks in hospital, and he remembers meeting other patients, who James now calls peers, on the ward. He also received regular visits from his relatives and because of their support, he was discharged early and received further care from Bosa Mental Health Unit at Mulago Hospital, with first weekly, then monthly appointments. Gradually, James began to recover. He stopped seeing value and importance in simple objects, his ideas and thoughts about migrations of people became less frequent and salient. However, the path was not completely smooth. He travelled back to the village on the advice of his psychiatrist, but one day he decided to travel back to Kampala alone. He was still not well enough to undertake such a journey and had to be physically restrained by another man. He remembers during the tussle his mother was nearby making recitations. He was overpowered and stayed in the village for some time. He became less paranoid, but the anxiety persisted for a while longer. Gradually, and he now doesn’t know how, he came to recognise that he was unwell, he had an illness and had not been himself. This is called insight.

James’ family were instrumental in his recovery. Not only did they help him get the care he needed, they stayed beside him, accompanying him to his appointments and involving him in daily errands like shopping, so he could stay part of his local community. His uncle and aunt were particularly important, by taking James regularly to the supermarket where they worked, he was able to get used to the work environment again. They also supported him financially and even helped him to find a job. Failing to find employment had been an important trigger in James’ mental illness. Having a job provided structure and all-important confidence and self-esteem. He says, “they had confidence in me that I could manage”.

James also found support from a group of mental health service users. He was introduced to this group by his psychiatrist at the Bosa Mental Health Unit. With this group he could share his experiences and learn from other peoples’ stories. As he says, “every person has a different way to deal with things”, but in this circle you don’t feel alone. Ten years on, many of these people are his close friends and James trains others in peer support alongside a full-time job. He is now using his lived experience to help other people and challenge the stigma associated with mental illness.

James has never had another relapse, but his memories of the time are vivid and still difficult to recount. He is sharing his story to help others who may be experiencing symptoms of mental illness or know someone who is. From James’ story we learn the important lesson that people with mental illness are often perceived as the perpetrators of violence, when in fact they are more likely to be victims of violent acts. His story is a testament to the strength of people who have overcome this challenge. Thank you, James, for sharing your story with us.

*James is a pseudonym but all other parts of this story are real.

Published 5th April 2020