Pyjamas and ice cream
Diagnostic overshadowing is far too common.
Finding North
I am currently a lived experience training officer at the Mental Illness Fellowship of Australia, working with Finding North. Everything we offer is free, delivered online and designed to be accessible to people with lived experience. I am here at TheMHS to talk about what we do and why it is important.
Designed by lived experience
Finding North has a strong focus on lived experience. Many of us who work there do not simply care about lived experience but actually live it. Lived experience is vital to mental health work. Through our Finding North Network, we run online meet-and-greets, open mic events and a yearly online Perspectives conference. These opportunities, along with our lived experience training, are primarily designed for people with lived experience. However, the annual conference also offers valuable information and insights for families, carers, supporters and kin.
Rights and self-advocacy
One of our most valuable programs is our rights and self-advocacy program. It is a free, seven-week online course available nationwide. This program aims to help increase the confidence and self-esteem of people facing mental health challenges to speak up and access mental health support suited to their needs.
- I want people to know how to speak up for themselves and understand their rights.
- I want them to know what to do when those rights are not upheld,
- Where to report an issue, how to find support and how to take a matter further.
People are often surprised to learn they have rights in these situations. By joining this course, people can connect with others who have faced similar experiences. We discuss not being believed by doctors or being treated poorly by medical professionals. That connection can help people feel less isolated and alone. Being dismissed can make us question ourselves. We can be made to feel that we are lying or that what we are experiencing is not real.
I provide peer and technical support for the course, and accessibility is a major priority for our whole team. When I speak with new people, I like to tell them that they can join in their pyjamas with a tub of ice cream if they want. They can leave their camera off or participate using the chat if they are having a non-speaking day. Our team works hard to make sure everyone can feel safe to join and be part of this program.
Falling behind
More broadly, the respect given to peer work and lived experience within government and policy is underwhelming. Lived experience is not sufficiently valued in research or policymaking, even though we are the people dealing directly with these systems. I have ADHD, and I keep seeing research published that confirms what people with ADHD have described for years, like sensory sensitivity. If lived experience was valued, people with ADHD could have revealed that years ago.
When lived experience is not valued, research falls behind what people already know about their own lives. I often see new findings and think, “We already knew that. Tell us something new.”
Valuing lived experience means more than inviting us to tell our stories. It means acting on what we say, in how research is done, how services are designed, and how we are treated when we walk into an emergency department. Too often we are thanked for our contribution and then asked to be patient. We have been patient.
We cannot wait
I am watching people burn out because of how hard they must fight against systems simply to remain safe and alive.
Recently, I had my Gallbladder removed by emergency surgery. If I did not continue to advocate for myself, I’m not sure if I would still be alive. The way I was treated because mental health information appeared in my medical records was appalling. I arrived in severe pain and bleeding, but I was not believed. I was sent home and had to return before my pain was taken seriously.
I know that people with mental health issues are being allowed to die because our experiences are not believed. That is not acceptable.
We need a significant shift towards believing lived experience and valuing what we say at face value. We cannot keep waiting and hoping for further research before accepting that our experiences are real. People are dying in the meantime, and we cannot wait.
