“We don’t socialise nearly as much and even family don’t know about his hoarding."
Hoarding disorder is a psychiatric condition estimated to affect more than 600,000 Australians.
While the compulsion to acquire or retain certain things affects the hoarders safety and can lead to isolation, depression and homelessness, it is often detrimental to the lives and relationships around them.
In one study relatives of people with hoarding disorder reported levels of functional impairment and emotional distress equal to that of the hoarder.
Anne* (not her real name) has lived with her son for 12 years throughout his condition and says it arose after a history of mental illness.
“[He] has been completely taken over by this illness, it’s such a waste of a life, he has so much potential,” says Anne.
“Just going in and cleaning up won’t solve the problem you have to get them to realise why you’re doing it and getting to that point is very difficult.”
Her son’s hoarding is confined to his room, car and shed, meaning guests are often unaware of the overwhelming problem that consumes the family’s life, driving them further into isolation.
“We don’t socialise nearly as much and even family don’t know about his hoarding,” she says.
“It takes a lot of time and physical effort and you get emotionally drained. The last 12 years of my life have been spent trying to help him.”
Why do people attach meaning to things?
The urge to hoard can be triggered by certain experiences, often traumatic, or existing mental health problems.
Those with hoarding disorder experience an exaggerated sense of sentimentality, utility and responsibility around items making it difficult to discard them.
Attempts to throw away or donate items can lead to severe hostility and resistance and the items can simply be collected again.
Jeanette Svehla, a psychologist and facilitator of Family as Motivators, a support group for relatives, says attendees often join after major conflict.
“Conflict arises when family members might be living in one bedroom, they can’t sleep on their bed or can’t use the kitchen or bathroom for its purpose,” she says.
“There is so much embarrassment about bringing someone into the home, especially as a child it can be alienating.”
Individuals suffering from hoarding disorder often demonstrate poor insight into their symptoms and struggle to acknowledge its contribution to family conflict and distress.
As well as encouraging her son to attend a support group, Anne has also been encouraging her husband to go to one so that he can better understand his son’s illness.
“It’s put a lot of strain on my marriage because my husband’s attitude towards the situation has been different to mine,” says Anne.
“Three months ago I told him he could leave. When this came up he started actively trying to understand and support him.”
Glenn Little, a psychologist and facilitator of Carers Support Group, says family and friends who reach out “might not remember the quality of the relationship once the hoarding is there.”
“We encourage them to go on ‘non-acquisition trips’ – where they can’t get anything - to remind them of the positive elements,” says Glenn.
As well as gaining an understanding of hoarding disorder and validating their experiences, members are warned of potential health and safety risks to those living in the home.
A study by the Metropolitan Fire Brigade of Victoria found a quarter of preventable deaths from fires between 1999 and 2009 were from hoarding households.
In extreme cases on the spectrum, mass amounts of belongings can also attract mold, disease and vermin.
Moving past the stigma
Hoarding has only recently been recognised as a distinct mental health disorder with unique symptoms and treatment. Prior to 2013 it was listed as a symptom of Obsessive Compulsive Disorder (OCD) in the Diagnostic and Statistical Manual of Mental Disorders.
Anne would like to see more positive education around the condition as she believes the shame and misunderstanding affects the wellbeing of the entire family unit.
“People out there don’t understand that it is an illness,” says Anne.
“He has lost all his friends. Young people aren’t as empathetic, they don’t have the skills to understand.”