The Power of Belonging: Reflections on Joining the Hub for Metabolic Psychiatry Research Community
12th-18th May is Mental Health Awareness Week in the UK and the theme this year is ‘community’. At the Hub for Metabolic Psychiatry, people with lived experience of severe mental illness are integral members of our research community. Their voices shape our questions, guide our methods, and ensure our work is grounded in real-life needs and experiences. In this blog Hub Lived Experience Group member, Nomhle Nhlapho, reflects on the importance of community and what being part of the Hub research community, in particular, means to her.
As a child I watched a lot of Tarzan and, like many children, his adventures and mannerisms fascinated me. It certainly helped that we had a lot of trees at home, and I could reenact, to a limited extent, Tarzan's tree swinging ways.
There is no better example that shows that we are a product of our environment than Tarzan. Tarzan is a human being who was brought up by apes and so began to see himself as an ape. He adopted their diet and learned to do many things that apes could do.
When a child is born, their searching eyes seem to be absorbing so much of their environment and quickly, we as a community, rally around them to teach them what it means to be human.
When I finally got the bipolar disorder symptoms under control, it was almost as if I had been reborn. I remember someone asking me whether I felt like I was now learning how to be, and that was exactly how it felt. Fortunately, in those moments of rebirth, I fell into the hands of the Edinburgh University team. I was invited to join the Hub for Metabolic Psychiatry as a Lived Experience Expert.
I didn’t know it then, but I needed that nurturing environment. Being part of the Hub Lived Experience Advisory Group is a space where you share your experience, and it is held without the pressure of worrying about whether another diagnosis will follow or a pill prescribed. Your experience of bipolar disorder is held and appreciated just as it is. Better still, it is appreciated by leading researchers who are genuinely curious to hear what you go through. And sometimes, these inputs inform further research.
My favourite moments are when someone else shares something and it brings to life my experience but from a different angle. For example, one thing that I was ashamed of was admitting that when mania starts, I enjoyed it and sometimes tried to harvest that energy and use it for my progress. Hearing someone else express that made me realise how normal my attempts had been.
There is a scene where Tarzan encounters other human beings for the first time. He begins to see that he was not defective, he was just not an ape. Although his “people” are the apes, just being exposed to the human beings made him accept himself better. The Lived Experience Expert team discussions have definitely facilitated a process of self acceptance that ordinarily wouldn't have existed in my normal life experience. For many years, I was the only person that I knew living with bipolar disorder.
There are three glaring benefits that have come from joining this community:
1) As a person with severe bipolar symptoms, I had been unable to work. My family therefore assisted me to start manual labor businesses. With my new found health, I wanted to gather some more sophisticated, service orientated working experience. The Hub provides so many opportunities to gather such work experience. For many of us, this is our first job. And what a privilege to work in an environment where being 37 years old and not knowing isn't shamed but celebrated because everyone knows that your being here is proof of a battle won
2) I now have friends in the United Kingdom and in the United States who I met through the work in the Hub. I never thought that would be my reality. For a long time I didn't even own a laptop, and often kept my phone off for long periods of time because I was unwell and didn't want people to access me in my poor state. Now, I have friends overseas!!! We are united by a cause so dear to my heart also, such a bonus.
3) I know of some of the most progressive and newest research in the bipolar world. And for the things that I don't understand, I have access to the researchers who can explain in great detail the outcomes of the research. All of which I share with my friends, family and those part of my support group.
I joined because I desired to contribute to research in the bipolar sphere but seeing dedicated teams of researchers in the bipolar field has touched my heart so much. In the lonely moments when I was suffering, I never imagined that there are people who wake up in the morning pursuing answers and solutions to help people such as myself. As part of the Hub Lived Experience Group, I feel I belong to a community that cares about people living with bipolar and although the wheels of impact turn slowly, I know that we are in the process of rewriting many people’s outcomes for the better.
Nomhle Nhlapho
Nomhle Nhlapho is a member of Metabolic Psychiatry Hub LEAP and the HELIOS-BD LEAP. She was diagnosed with Schizoaffective Disorder Bipolar Type 1 in 2015. She has been managing her illness through diet since 2021.