Thriving with Schizophrenia
I was diagnosed with schizophrenia back in 1991 when things were very different back then – mental health was not a topic that was discussed but rather avoided. So for me the journey started in a very dark and lonely place, and I found myself overwhelmed by fear of this word “schizophrenia”.
Following my diagnosis I had to turn to the library to find resources (no internet at the time) about schizophrenia and what it meant for me. The psychiatrist avoided sharing any information with me, which made matters worse from what I could expect going forward. Experiencing schizophrenia for the first time is distressing. Experiencing it in an environment where stigma, discrimination and ignorance exist, is so much more destructive. I became increasingly withdrawn, isolated, scared, confused, and could not see a way out. As my life spiralled out of control, I ended up losing everything that mattered to me – my independence, my voice, my dignity.
After spending a total of 4 years in psychiatric hospitals, several involuntary admissions and experiences of emotional and physical abuses within the very same mental healthcare system that was supposed to help me, I became determined to change this system. I found psychiatric hospitals to be prison-like, traumatising, undignified, and in no way conducive for recovery. That was the moment the course of my life changed because now I had a purpose.
In 2003 I started my advocacy journey, got involved in establishing and managing service users groups in South Africa and facilitated empowerment of service users to self-advocate. In 2018 I founded and officially launched the Global Mental Health Peer Network (www.gmhpn.org) and since January 2019, I commenced my position as CEO of the organisation.
The Global Mental Health Peer Network is an international peer-led organisation that builds capacity among people with lived experience of a mental health condition through empowerment, peer-to-peer mentorship and peer support. The organisation has an established Experts by Experience Consultancy Services unit that is unique in that it involves only persons with lived experience in the delivery of its services, and contribute unique perspectives across diverse contexts. The Global Mental Health Peer Network is exclusively and completely represented by persons living with mental health conditions. Collectively, and across six world regions, our organisation and its members work towards the common goal of uniting perspectives and recommendations from our members to inspire change. This is the one thing I am most proud of in my life – the Global Mental Health Peer Network and its members.
Since the start of my career in mental health, I have managed to gain national and international recognition as an advocate for persons with lived experience with mental health conditions, and have had amazing opportunities to consult and engage at high-level platforms, provide lived experience perspectives into high-level and strategic documents, speak at national and international conferences, published articles in international medical journals, guest lecturering at universities, serve on numerous national and international boards and committees, and have won several awards for my work. My success I owe to many individuals who believed in me and my abilities and gave me opportunities to thrive.
By Charlene Sunkel (South Africa)
Founder/CEO of the Global Mental Health Peer Network