I’m a member of ‘the human race’, as well as being a mother of four children. My middle child was diagnosed with a mental illness in 2016. I experienced some different emotions during that difficult time. I was so frightened regarding my son’s unusual behaviour. I could not understand what was happening, or why this was happening within my family. At times, I felt angry because everything seemed to be out of my control. I began to isolate myself. I could not even tell my family or friends in the first instances; it was too embarrassing. I did not want to speak to anyone. I felt so disappointed in myself; I thought I had failed in my duties as a mother. Sometimes, the feeling of guilt would consume me so much. My stomach would constantly be in pain. My head and heart would always be pounding so loud. My sleeping patterns were altered so much that I could not remember if I managed to close my eyes at times during those bleak nights.

I am an informal carer for my partner, and I have been playing this role for several years. I also have a daughter aged six years old. Being a carer has been challenging due to managing the different role and responsibilities as a partner, carer, and a father.

My brother was different right from childhood. A lot of firsts in the family were witnessed in him. The age gap between him and his immediate younger sibling was the shortest (less than two years). He stood and walked later than his five siblings and he was the only one to have a febrile seizure. However, my brother was also more sociable than anyone else in our family; the only one interested in the entertainment industry. As a child, sometimes he would manifest some baffling behaviours that our straitlaced family found difficult to understand. This led to punishments in an effort to curb some of these behaviours. I think because he was punished more often than the well-behaved siblings, perhaps he had a feeling of not being loved as much as they were.

I was 11 when my mum told me that she was going into hospital because her ‘headaches’ were troubling her. We were on a walk together and I remember her starting to talk as she took my hand to cross the road. I asked her how long she’d be away for, and she told me that she didn’t know but it may be a few months. I’m 44 now and she still hasn’t come home. I promised her on that walk that I would write to her every day. I kept that promise, writing each night before I went to bed. I wrote until I ran out of paper, but I never heard back. I used to hide the letters under my mattress and, every so often, I would give my dad a carrier bag full of ‘My Little Pony’ envelopes to give to her. I didn’t ever ask him what she said or even if he gave them to her but that feeling when I didn’t hear back is one that I’ll never forget. My mum had a number of hospital admissions prior to this one. Nobody ever told me what was really happening though. I would just see my dad standing in my mum’s spot by the school gate and I’d know that she was gone again.

Psychosis is the generic name given to a range of illnesses that can affect the mind and interfere with how a person thinks, feels and behaves. The term psychosis covers several different conditions, for example, drug-induced psychosis, psychotic depression, schizoaffective disorder and schizophrenia spectrum disorders. The precise name used can change over time and will depend upon the pattern and length of difficulties that an individual has. A diagnosis of schizophrenia is considered the most severe type of psychotic illness and almost one person in every hundred people will be diagnosed at some point in their life. It used to be thought that schizophrenia was a discrete illness that was quite separate from other psychotic illnesses such as depressive psychosis.

It has truly been strange to be asked to write a piece from a carer’s perspective as when it comes to family, you never see yourself as a carer, probably due to the stigma that is attached to mental ill health and ‘looking after family’ in the South Asian culture.

This set of first-hand accounts offers insights into the diversity that exists in carer experiences and caregiving impacts in psychosis, and in carers’ ideas and suggestions about strategies that have supported their coping.