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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.
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.
Supporting a relative living with a psychotic disorder can be uniquely challenging when compared to other health conditions, leaving many family carers isolated and struggling with questions: Why us? How do others cope? Is it my fault? How much more can I take? This collection of personal accounts provides family carers with a helpful framework to make sense of their individual experiences and support their own coping and wellbeing. It details the myriad of positives, challenges and life-changing experiences that families encounter following the development of a psychotic illness in a loved one. The authors of these accounts are varied and include the parents, partners, siblings and children of those experiencing psychosis. This book will also serve as an excellent resource for psychiatrists, psychiatric nurses, psychologists, social workers, GPs and students who should find the book relevant both for their own practice and for those families they support.
As someone who has researched the effects on carers living with people with severe psychiatric disorders, the author describes her own recent experience of being a carer. The article serves as a companion piece to her psychiatrist husband's account of his cognitive decline in Alzheimer's disease.
Sexual abuse and bullying are associated with poor mental health in adulthood. We previously established a clear relationship between bullying and symptoms of psychosis. Similarly, we would expect sexual abuse to be linked to the emergence of psychotic symptoms, through effects on negative affect.
Method
We analysed English data from the Adult Psychiatric Morbidity Surveys, carried out in 2007 (N = 5954) and 2014 (N = 5946), based on representative national samples living in private households. We used probabilistic graphical models represented by directed acyclic graphs (DAGs). We obtained measures of persecutory ideation and auditory hallucinosis from the Psychosis Screening Questionnaire, and identified affective symptoms using the Clinical Interview Schedule. We included cannabis consumption and sex as they may determine the relationship between symptoms. We constrained incoming edges to sexual abuse and bullying to respect temporality.
Results
In the DAG analyses, contrary to our expectations, paranoia appeared early in the cascade of relationships, close to the abuse variables, and generally lying upstream of affective symptoms. Paranoia was consistently directly antecedent to hallucinations, but also indirectly so, via non-psychotic symptoms. Hallucinosis was also the endpoint of pathways involving non-psychotic symptoms.
Conclusions
Via worry, sexual abuse and bullying appear to drive a range of affective symptoms, and in some people, these may encourage the emergence of hallucinations. The link between adverse experiences and paranoia is much more direct. These findings have implications for managing distressing outcomes. In particular, worry may be a salient target for intervention in psychosis.