A family story: complex mental health

Presenter, Mamamia online editor and journalist, Elfy Scott is the author of The One Thing We’ve Never Spoken About, a book about her lived experience of her mother’s complex mental health condition. We spoke to Elfy, who lives in Sydney with her partner, for Women’s Mental Health Week.

My goal writing the book was partly selfish – to explore my mum and family’s story but mostly I wrote it because I know how alone I’ve felt in my family’s journey with complex mental health for a long time. I came to believe that surely there must be many, many other people like me out there.

I’ve created this as a resource to make people feel less alone and to educate the broader public.

I think that most people are profoundly lacking education around complex mental health conditions – and there are a few reasons why: Firslty, the relative rarity of complex mental health conditions plays into why but so does the stigma. Stigma prevents people from having honest conversations around these conditions. Secondly, the mental health education I received in school was in no way near adequate for understanding mental health conditions with any depth – and particularly not complex mental health conditions.

Women's Health Week runs September 4-10. The 2023 theme “Grow your knowledge” aims to support women to make informed health choices. Elfy’s book discusses her family’s courage and hope. 

I wanted the book to try and shift the narrative around complex mental health conditions, I wanted to stress that recovery is possible, that there are lots of “normal” people out there living with complex mental health conditions, and that receiving a diagnosis is not a life sentence, as so many people can be led to believe.

I believe it’s important for us all to understand, to the greatest extent possible, any factor that may prevent people from living fulfilled, successful, and happy lives. Complex mental health conditions are certainly a part of that. They touch so many Australians in some way or another. I think we have a social responsibility to understand them as well as all of the systemic factors that can compound the issues of living with these conditions.

My mum has been really lucky in that I feel like she hasn’t experienced stigma to the extent that I’ve discovered from other people living with complex mental health conditions. I admit our family failed to speak directly to one another about her schizophrenia. This is, in and of itself, a direct product of stigma and it certainly led to my mum, and the rest of us, feeling isolated at times.

My mum lives a whole, busy and wildly successful life. She goes to the gym just about every day, she goes to French class, she makes dinner and goes out for long lunches. Her psychosis comes and goes and right now, she’s been very stable for a long time and (as far as I know) doesn’t regularly hear voices anymore.

Elfy’s mother has received regular private psychology sessions as well as ongoing psychiatry sessions to help her manage her wellbeing. The book, which is available online, is an important and unique resource that puts together research as well as a range of stories from average Australians. Elfie share why this is so important.

Given schizophrenia is such a variable condition (regarding impacts and extend of symptoms) it’s important for the community to understand about complex mental health illness. I wanted to reinforce the concept of a continuum in the book as much as possible, because I think that’s a really underrated part of dispelling stigma.

As a SANE Ambassador why do you think there are so many misconceptions about schizophrenia?

I think it’s extremely complicated how stigma reinforces misconceptions and vice versa, but on a very basic level, I think there’s a broad failure of education that’s reinforced both by failures in the mental health care system and narratives in popular culture.

What is your advice to women dealing with complex mental health either personally or caring for others with conditions?

I think people should look for carer organisations in their areas. They can be incredibly helpful resources and I think it’s worth trying to connect with the community that you can. Feeling isolated, on top of everything else, can be absolutely devastating, and I think that simply reaching out to discover that you aren’t alone in whatever it is that you’re going through can be so profound and so beneficial.

What do you and your family hope for re. changes to complex mental health care provisions?

My family are only just beginning to talk about it all openly to be honest! Our growth has really been encouraged by the publication of the book, so we’re still in the very early stages of coming together over it and acknowledging everything out loud together. I suppose that’s courageous.

I certainly have some friends and acquaintances who live with complex mental health conditions and I encourage everyone to learn more and lend support.

SANE provides a range of support to people and families who have lived experience of complex mental health. Click here to connect with other people by joining our forums.