Photojournalist Manu Valcarce captures the reality of living with the disorder
Everyone has their way of controlling the space around them. From what we need to what we want, the things we decide to fill our homes with are integral to who we are, and when we no longer want or need them, we just get rid of it. But what happens when the ability to self-edit disappears?
Photojournalist Manu Valcarce wanted to capture the reality of living with a hoarding disorder by documenting the slow and intense journey of cleaning a hoarder’s house, room by room. The series entitled The Meaning of Things, focuses on the human cost of living with the disorder. Valcarce began volunteering with Making Room, a charity in London that provides advice, support and therapeutic decluttering programmes for those living with the disorder.
“It has been by no means easy. Gaining access, building trust, dealing with trauma and isolation, the physical conditions of the homes, the smell, the dirt, the frustration, the lack of progress, and the sheer patience to move forward. But it was worth every newspaper dumped in the bin.”
“What I love about this project is that it's an invitation into a completely different world. A different world that is five minutes away from my house, yet unnoticed.”
"It was worth every newspaper dumped in the bin"
Up to 3 million people in the UK suffer as a result of a hoarding disorder.
The disorder was only added to the Diagnostic and Statistical Manual (DSM) of Mental Disorders, the backbone of the American medical profession, in 2013. Before then, pathological hoarding behaviour wasn’t recognised as a stand-alone condition. Instead suffers were treated using diagnoses such as OCD, anxiety, or with no diagnosis at all.
The classification of hoarding disorder as a separate diagnosis is a long waited validation for sufferers and their family members, who know from experience that hoarding is not a quirk.
A collector has control over their possessions, but a hoarder has none. Objects stop having any standalone emotional or practical resonance and turn into a deluge of decisions. Rather than regularly sorting through their possessions, hoarders just keep everything. Deciding to keep the most generic of objects becomes overwhelming, until eventually, the condition transforms a home into a torrent of stuff – leaving the hoarder, and everyone close to them, feeling the impact.
Megan Karnes, of Hoarding UK, an organisation set up to change the way we perceive hoarding, says misconceptions around the disorder are hard to dispel. “Because of a lack of awareness, people affected by hoarding are often pushed deeper and deeper inside their homes.”
For suffers confronting the problem means facing the emotions behind it. Karnes explains that hoarding behaviour is often triggered by trauma, bereavement or any other significant life event. Hoarding acts a coping mechanism where the sufferer tries to fill an emotional hole by accumulating “stuff”.
“At its base, [hoarding] is fuelled by anxiety. We all have cupboards that hold food that will be used at a later time. For a person with hoarding tendencies the perceived value of the item, and the level of distress that results when trying to discard them, combine to make the person feel overwhelmed by the process and they just stop trying.”
From not having a surface to put things on, access to your bed or bathroom, to when those piles decay and render a home unlivable – hoarding is a form of self-neglect.
"Hoarding is a form of self-neglect"
Research suggests hoarding runs in families. If a person is raised in a house with a hoarder, they are less likely to have the inbuilt systems needed to manage their space. But research suggests hoarding can also be hereditary. In a research paper published in 2007 compulsive hoarding was linked to chromosome 14 – distinct from other obsessive compulsive disorders, which are linked to chromosome 3.
It’s not known if the correlation was generic or just a modelling effect, but in other tests hoarding characteristics are associated with distinct abnormalities of brain function and neuropsychological performance from other compulsive disorders.
Treatment is complicated, mainly because it’s only when the issue is in plain sight that the problem can be dealt with. Under the 2014 Care Act, self-neglect – which includes hoarding – comes under the care of local authorities. If someone is at risk to themselves, the Safeguarding Adults Board, consisting of local authorities, the police, the NHS and other relevant bodies, have the power to intervene.
Sufferers often shun family and friends in favour of preserving their environment. When the compulsion overrides the ability to keep a home safe and clean, getting help goes against the grain of the disorder. Professional intervention is often vital but involves a tentative approach of combined mental and physical care.
Karnes suggests that without proper support, clearing a hoarder’s house can sometimes make the situation worse:
“To be frank, this action may not result in the person with hoarding behaviour getting the support that they may need. It’s not because services do not want to help, but because of limited resources. A 'quick fix’ focus on removal of items, instead of a holistic intervention that supports personal and spatial change, creates a superficial intervention and could lead to the individual retreating into their hoarding behaviour, which leads to more serious problems like eviction.”
Simply clearing away the clutter does little for the suffer. Trauma is a personal experience and can manifest itself is a thousand different ways. But the wider issues of difficulties with decision making, and for hoarders to break the physical and mental barriers caused by the condition, everyone needs patience and resilience.