From a Paranoid Schizophrenia Diagnosis to a Peer Researcher in Nigeria

Growing up in a dysfunctional family where my father was not available most of the time and, when he was available, he did not take full responsibility, made me feel inferior to my classmates in school. I also experienced a lot of emotional abuse as a child from my mother who was taking responsibility but could not offer me emotional support because she was overwhelmed. I remember how she once said to me, “it is only on your birthdays that I don’t have money” and I had to ask my friend why God created me because the statement traumatized me.

We were living in poverty with my siblings and life was difficult. My mother had to get a compound interest loan to pay my first year University fees. There were days I didn’t eat, but God came through because I got a university scholarship due to my academic performance which helped me in my final year. I also used part of the money to start my master’s programme. In 2012, during my master’s programme, my younger brother got sick and could not get appropriate treatment so he died. It was so painful but I had to be strong for my mother and sister. At this time, I also needed to pay for my second-year master’s programme and there was no money so I thought I would drop out, but God used someone to provide for me and I was able to pay and conclude my master’s programme in 2013. However, I have not been able to go for my PhD since then due to financial constraints.

After my master’s programme, I learnt how to sew bags before I secured a teaching job at a private school, where I was earning very little but I enjoyed my job because I am very passionate about teaching. I always advocated for my students during staff meetings when I was a teacher. I always wanted and still want to help children and adolescents who are going through the things I went through when I was at their age. I have since then taught many subjects including biology and basic science in both primary and secondary schools. I was and am still very optimistic about children and adolescents who have learning difficulties or behavioral challenges because I believe that there are many abilities in every disability. I have examples of persons who were once my students with these challenges that are doing very fine now. I also have the desire to learn how to be more helpful to these children and adolescents.

However, as a teacher I also experienced a lot of emotional abuse from colleagues and acquaintances who I ran to for help. They told me things like, “you don’t know what you are doing”, “you don’t know where your mates are”, “she will sit down morose but has serious spiritual problem”, “which kind of witch is this?”, “God punish you”. A pastor also sent me away from his church with cane and threatened to report me to the police when I went to him for prayer because he believed I had something projected in me to make men of God fall. All these statements and actions really affected me psychologically as I thought God had forsaken me and did not love me which made me stop praying and going to church. I believe all these negative experiences made me to start behaving irrationally and severely depressed because I was suicidal. I also became very paranoid as I was afraid of staying alone and meeting new people. I called my mother a witch and I had insomnia with poor appetite. I also lost interest in teaching, confidence and ability to speak in public.

During my first episode of schizophrenia in 2019, I was taken to our pastor by my mother, sister and a few church members for prayer. The pastor prayed for me and referred us to a hospital by giving us the contact of a psychiatric nurse. We contacted the nurse and he directed us to the psychiatric clinic which we went to for treatment. My mother and I were questioned and I was diagnosed with schizophrenia. The doctor gave me an injection and also placed me on Risperdal, which had side effects such as overeating, excessive sleeping, bloating and agitation. I complained these side effects to the doctor and he said they were normal but I was not satisfied with the response so, I eventually stopped taking the medication with the approval of a pastor.

I lived a normal life without any medication until mid-2020 when I had another episode and was taken to another hospital where I was admitted but ran away the next day to another town because I believed what I needed was prayer. My parents looked for me and found me but when they wanted to take me to the first hospital I refused. I was eventually put in my cousin’s care who I decided to stay with because I did not want to stay my mother since I thought she was a witch. After two months with my cousin, I had a terrible episode where I did not sleep throughout the night and felt like going out in the middle of the night. I eventually left my cousin’s house very early in the morning and they had to look for me. When they found me, they called a doctor to examine and he prescribed some medications. I was later taken to the hospital where I was first diagnosed for admission but when we got there, we did not have the bill they asked us to pay so I told my mother to take me home.

When we got home, I became so agitated that I wanted to leave the house that night because I could not sleep and they had to take me back to the hospital the next morning as a few distant family members promised to pay my hospital bills and I was put on the ward. I was diagnosed by another doctor as having paranoid schizophrenia. I complained about the side effects of my previous medication and it was changed to olanzapine 10 mg at night. I was taking the medication religiously and I got better. One thing I love about my ward experience is that the psychiatric professionals were empathetic and caring. They were truly concerned about my holistic care. I remember that the doctors asked me several times what I would like to do after my discharge and I said I loved research.

After one month on the ward, one of the team of doctors that were taking care of me sent an advert of a peer researcher to another doctor who was on call and asked her to show me the advert; peradventure I would be interested. I read it and even though I did not understand anything about the advert I was intrigued. The doctor had to use his email address to send an application for the job since I was not with my phone and did not have access to the internet. Thankfully, I was discharged two days later so I was able to send my curriculum vitae and credentials to support my application letter. I was invited for an interview and I performed well. After five months I resumed as a peer researcher on the project titled, Support, Comprehensive Care and EmpowErment for persons with psychosocial Disabilities in sub-Saharan Africa (SUCCEED Africa).

SUCCEED Africa is a six-year project which began in 2020 that aims to develop and deliver holistic care intervention for persons with psychosocial disabilities while safeguarding their fundamental rights. It is a collaborative effort between researchers from Malawi, Nigeria, Sierra Leone and Zimbabwe and the United Kingdom. It is funded by the Foreign, Commonwealth and Development Office (FCDO), United Kingdom. We have concluded our pilot intervention which is currently going through evaluation. We partnered with indigenous Not-for-Profit organizations to implement our pilot intervention. Community support workers and peer support workers had a supervisor who carried out activities in delivering the intervention. We are preparing for our main intervention which is going to be an individualized, randomized controlled trial.

SUCCEED Africa operates on the principle of co-production which involves collaboration between experts by experience who are called peer researchers and experts by profession in designing, developing and delivering the holistic care intervention. Co-production has really impacted SUCCEED Africa positively because peer researchers are able to contribute meaningfully from the inception of the project and this has helped to reduce stigma and assumptions around psychosis in the community when we share our recovery experiences. The use of co-production has also helped the project to build trust with stakeholders who have been harmed by research, policy or services in the past.

As a peer researcher who does not have a qualitative research background, the research methods in SUCCEED Africa were new to me when I resumed but the principle of co-production has given me many opportunities to receive both internal and external trainings which have built my capacity for qualitative research and made me a better person. I have received certifications on WHO QualityRights training, Research Ethics and Conflicts of Interest. I have also acquired research skills such as data collection, transcribing of audio data, data analysis, plotting of theory of change map, translation of English into Yoruba language and back, paper writing and public speaking. Personally, I feel fulfilled that I am involved in making the lives of people better and making a positive change in the society. I am now also married with a daughter and my income is better. I have also learnt so many things about mental health and my hope for the future has increased.

As a result of everything I have been exposed to through SUCCEED Africa and my passion for helping children and adolescents, I have been inspired to establish a Not-for-Profit organization for children, adolescents and adults who have mental illness which will center on providing hope for their overall wellbeing after the completion of the project. I wish to run a master’s programme in child and adolescent mental health to further equip me to help this set of people but I do not have the financial capacity. I hope to help children and adolescents who are from dysfunctional family settings, are going through traumatic situations and have mental illness as well as adults while providing support to their families. I hope to provide support, link them to quality biomedical care and empower them with lifesaving skills while respecting their fundamental rights and practicing ethics in service delivery. I also hope to provide support to their families to enable them better care for their family members who have mental challenges.

The current mental health system in Nigeria and in the world needs to adopt the principle of holistic care, promoting the fundamental rights and the relevance of family support in the care of persons with mental illness. The system also needs to make mental health care affordable to the poor and possibly make medications free. Health workers also need to make the voices of their patients count by showing genuine concern to their complaints. It is also very imperative to embrace the principle of co-production in mental health research as the positive impacts are evident in the SUCCEED Africa project and in the lives of peer researchers on the project. Equally important is the need for parents, religious leaders, teachers and other stakeholders in the society to treat people with kindness and say uplifting words instead of hurtful words.