When my mum was diagnosed with paranoid schizophrenia, I was 18 years old. I was so young, a teenager, facing unknown territory. What did this mean for me and my mum? I was left on my own to figure it out.
Sadly, I didn’t have any family members to discuss it with because mental health is very much a stigma. Before she was diagnosed, I was already isolated from a lot of my mum’s close family members as they lived in the countryside, so it was a scary time.
I wasn’t visible to social services. I was navigating a big city and a big mental health system on my own. As my mum’s mental deteriorated, I made the decision for her to go back to Northampton as it was a smaller town and her family were based there. I thought they would be more supportive if she were closer to them.
We were a close knit family when I was a child. My mum, her sisters and my cousins used to congregate at each other’s houses. But after the diagnosis, this changed. They wanted a relationship with me, but not my mum as they didn’t know what to do or what to say. That wasn’t acceptable to me.
I ended up staying in London to attend college and start my first job. I kept in touch, checked in with her regularly and brought her to London to stay with me. But I was in a constant state of not knowing what to do while transitioning from childhood into womanhood.
I was left to deal with ‘the experts’ on my own. In this case, it was my mum’s Community Psychiatric Nurse, who I didn’t find very helpful. Her advice to me, over the phone, was that your mum is going to be on medication for the rest of her life and that I would inherit this mental illness.
After that, I was left in a state of fear. Fear that I was going to develop mental illness. I was confused and didn’t know what to do. I was left with many questions, but no answers.
This curiosity led me to pursue a degree where I learned about diagnoses. After I graduated, I started to attend conferences on psychiatric diagnoses where the questions I had as a teenager were answered. I heard about people’s lived experience as being meaningful. And despite what the nurse had said about inheriting my mother’s mental illness, I discovered that this wasn’t necessarily the case.
Having access to research and real life experiences made me feel empowered, and I grew in confidence. At this time, my mother was on medication at a high dosage. She would have a depot injection once a month at the GP, but her case wasn’t being reviewed.
It didn’t feel right to me that the focus was purely on her physical health, but I was young. Once I acquired more knowledge, I took a more active role in her care. I would make appointments for her to be seen by a Psychiatrist and I was able to get my mum’s medication reduced from 40mg to 20mg.
I spoke to my mum’s GP and asked for her case to be reviewed. Her physical health was deteriorating, and she was diagnosed with diabetes. The GP referred her to the community mental health team, which I attended with her, and I spoke about all my concerns built up over two decades. That is when her medication was reduced.
Last year my mum had a relapse. My mother’s Psychiatrist had changed. Once again it was difficult to get her the right support. At this time my mum had an argument with her sister that triggered old and painful childhood traumas, amplifying her mistrust of people.
The new Psychiatrist saw my mother’s presentation as her being verbally aggressive; the angry black woman, which was used as a justification to increase my mum’s medication from 20mg back to 40mg. I challenged this decision because she hadn’t presented any risk to herself or others.
After some resistance from the Psychiatrist, I managed to convince them to reduce the dose to 30mg. What the Psychiatrist continued to block was my repeated request for my mum to have access to psychological therapies.
What the Psychiatrist saw as delusions were, in my view, the presentation of her childhood trauma. I felt that the Psychiatrist wasn’t really listening. There was definitely racism at play as part of their clinical judgement. There was no consideration of the reasons why, after so many decades, she was presenting like this. The psychological support would have helped her deal with the trauma.
This is why we need people within the mental health workforce who understand the needs of particular black and ethnic minority communities. If I had access to someone who understood my mum’s journey, background and experiences – and mine – that would have made a significant difference. Instead, the focus has always been on my mum’s diagnosis, and nothing else. Nothing about her experiences as a child growing up as a first generation West Indian woman coming to this country.
When my mum was doped up on medication, I felt my attachment to her was lost. When her medication was reduced, her emotional engagement increased. She showed an interest in activities like cooking, which she used to do a lot when I was a child, and wanted to take cookery classes.
When she was at school in England, my mum was made to feel that she wasn’t good at maths and English. Now, she wanted to do maths and English classes. I feel like I have got a bit of my mum back. Before, she didn’t want to do much except stay at home all the time, which impacted on her relationship with me. Now, she is very different.
I have been on this long winding road of discovery – from her initial diagnosis to doing my degree – for 20 years. During those years I have been her primary carer. I’ve been gaining professional experience in the mental health system after initially working with children and families. I’m now working in different areas of mental health to build up my experience, and I’m in the process of applying for clinical doctorate training.
Working towards becoming a Clinical Psychologist is a big achievement for me. I want to be able to work with communities and raise awareness of mental health. I want to help them to know that their voices matter.
I want to show the importance of knowledge and giving people the confidence to do what I’ve done over 20 years, which has allowed me to give my mum a voice and to advocate on her behalf.
Ann-Marie was speaking to Joy Francis
Ann-Marie is a carer to her mother, works at a Mental Health NHS Trust and is working toward being a Clinical Psychologist. You can read her full bio here.