Since lockdown started, Faye Dawson has been forced to sleep on her sofa and eat sandwiches and cold ready meals because her kitchen is out of bounds.
It’s not that she has the decorators in, or that her home — a one-bedroom flat in a desirable part of Central London — is undergoing repairs. The reason Faye can’t access her bed or kitchen is because they are jam-packed with things.
Faye is one of the estimated 1.2 million people in the UK living with hoarding disorder, a little-known but debilitating psychiatric condition. Whereas earlier this year she was improving with treatment, the uncertainty of lockdown has increased her compulsion and now she describes her once spotless home as ‘a prison of clutter’.
‘Not only do I compulsively buy things I don’t need online, but I also have to check everything I come into contact with before throwing it away,’ says Faye, 42, a massage therapist.
Since lockdown started, Faye Dawson (pictured) has been forced to sleep on her sofa and eat sandwiches and cold ready meals because her kitchen is out of bounds
‘Receipts, food items, shoe boxes, even milk cartons all have to be checked and checked again. Then they are stored away if I don’t feel comfortable throwing them out yet. Now I can’t even get to the microwave, as the kitchen is so full.
‘The only small space for me to sleep in is a spot on the sofa, and the bathtub is filled with my clothes because there is no space for them in the bedroom.’
Experts fear there may be many like Faye whose hoarding problem has been exacerbated by lockdown.
Lockdown ‘definitely set people back’, says Jo Cooke, director of the group Hoarding Disorders UK. ‘We’re running online and telephone support and we are getting new people coming to us, over and above what we normally see.’
Hoarding disorder is much more than having a few secretly messy, over-stuffed cupboards. ‘To be diagnosed, it has to be impacting on your day-to-day life quite significantly,’ says Dr Sophie Holmes, a consultant clinical psychologist at Sussex Partnership NHS Trust, and author of the British Psychological Society’s official guidance on the condition.
‘We’re not talking about people who have a lot of books — it’s people who use their bed to store their books on and so can no longer sleep in it,’ she says.
It’s thought that hoarding disorder — which was officially added to the World Health Organisation’s international classification of diseases in 2018 — is for some a coping mechanism, in particular a way of coping with stress, loss and trauma.
Lynn Howells, 60, (pictured) a secretarial administrator from Ascot, Berks, traces her hoarding problems to starting at boarding school aged 11
‘Right now, people are not able to grieve normally, whether that’s not being able to say goodbye to people in hospital or having to wait to hold a funeral, which makes letting go of things much more difficult,’ says Jo Cooke.
People with hoarding difficulties often spend a lot of time outside of their home, at work or socialising, so they don’t have to face up to the problem — something lockdown did not allow.
‘They were not able to ignore it,’ says Dr Holmes. ‘And if your usual coping strategy is to avoid something, it’s highly likely other difficulties emerge — either the hoarding itself may worsen or it could lead to increased low mood.’
Hoarding disorder can have physical consequences, too — people who hoard are at increased risk of respiratory problems, such as asthma and emphysema, possibly because of the dust that can accumulate in their homes.
And they can struggle with sleep problems, according to a 2015 study by U.S. researchers, although why is not understood.
Surprisingly, people with the disorder were unlikely to be the ones stockpiling loo roll and pasta at the beginning of lockdown.
‘Hoarding disorder isn’t motivated by an acquisitive, selfish approach to life,’ says Dr Stuart Whomsley, an NHS clinical psychologist in Northamptonshire. ‘Yet the word hoarding was used in connection with panic-buying. If anything, this could have increased the shame people with this disorder already feel.’
He says it’s common for hoarding to begin in childhood or early adolescence, go dormant for many years ‘perhaps because of living with other people who put a constraint on it’, and then start up again in later life.
Having an excessive attachment to objects can be exacerbated by bereavement, neglect, miscarriage — in fact, any trauma, adds Jo Cooke. Faye’s problem began when she was seven and her father left the family home. She says holding on to things made her feel ‘safe’.
Lynn Howells, 60, a secretarial administrator from Ascot, Berks, traces her hoarding problems to starting at boarding school aged 11. Her parents worked overseas and so, unlike many of the other boarders, she didn’t get to go home at weekends.
‘I felt very isolated,’ she says. ‘I think that’s when I started to surround myself with things.
‘Most of my pocket money would go on Donny Osmond posters, magazines, and books. At the end of term, the matron threw it all away because there wasn’t room in my trunk. I was so frustrated and upset that I bit her hand.’
Faye (pictured) is one of the estimated 1.2 million people in the UK living with hoarding disorder, a little-known but debilitating psychiatric condition. Whereas earlier this year she was improving with treatment, the uncertainty of lockdown has increased her compulsion and now she describes her once spotless home as ‘a prison of clutter’
It was after she began working in London that Lynn’s hoarding started to escalate and when the problem was at its worst six years ago, she couldn’t get into her kitchen as her possessions were stacked to the ceiling, and two bedrooms were not usable as they were filled with stuff.
Hoarding disorder often comes to the attention of mental health professionals only when someone is seen for another condition, says Dr Whomsley.
There is a significant overlap with depression, and around a third of people also have obsessive compulsive disorder (OCD), which causes obsessive thoughts and repetitive behaviour.
‘There are possibly more people for whom there’s an overlap with ADHD [attention deficit hyperactivity disorder, which causes impulsiveness],’ says Dr Whomsley. ‘For these people, hoarding may be more to do with an inability to organise belongings rationally, rather than owning too much.’
Of course, lockdown affected not only those with a hoarding disorder, but their families, too. ‘Suddenly families were thrown back into living with each other in a hoarded environment, which proved very difficult for all concerned,’ says Jo Cooke.
To support people with a hoarding disorder, being non-judgmental is key, says Dr Holmes. ‘Nagging will only make people who are already feeling unsupported feel more stressed,’ she adds.
Nor is having an extreme clear-out the answer — an unhelpful misconception perpetuated by reality TV shows, adds Dr Whomsley. ‘You have to change the physical environment and what’s going on in the person’s mind,’ he says.
Individual therapy to address issues such as bereavement or past trauma can help.
Lynn, who runs a support group for the housing association she works for, Silva Homes, says: ‘There’s still a lot of stigma. But we’re not lazy or dirty. We’re just normal people trying to deal with things in our own way.’
Additional reporting: NILUFER ATIK
CITIZEN SCIENCE: The medical breakthroughs helped by ordinary people
This week: Endometriosis
Women with the painful womb condition endometriosis are being asked to record their symptoms on a mobile app to help doctors better understand the problem. Around one in ten women of reproductive age in the UK has endometriosis, where tissue similar to that in the womb grows elsewhere in the body. Yet doctors still know very little about it and most women are undiagnosed because symptoms can be so wide-ranging. Now researchers at Columbia University in New York are asking women to track information — including symptoms, diet, treatments, mood and pain — to give doctors a better insight.
Anyone who has periods can use the free app called Phendo, available to download on Apple devices (women who don’t have endometriosis will be used for comparison in the study).