“They said, on the news [about people experiencing hoarding disorder], “They’re messy, sentimental, and they think all trash is treasure”. Wrong, that is wrong. I would say that hoarding disorder is really about the idea of attachment. It’s an excessive attachment to things,” said Bec.
“It was supposed to be a story about the hoarding conference that was going on with researchers from around the world but really, they made this story about what a fire hazard these awful hoarders cause, that was the real punch of the story. “These hoarders are costing the country billions of dollars!” That was the story, and they didn’t even mention that a conference was happening, they didn’t mention that treatments are being developed and that people are working on this. They just talked about, I think it was about 30 per cent of fire deaths are related to hoarding situations. So the emphasis was on the money and not care of the people…They didn’t take any consideration of the mental health of the person-centred aspect of it, it was all about the money and the physical damage.”
The sensationalism and judgement that greets people who are living with clutter is something that Lee and Bec tackle in their work around the world. It is not just in Australia or the US that people experience hoarding behaviours, however, there are a lack of positive or hopeful stories in both countries that Lee and Bec aim to counter because they know of the serious negative impacts of such stigmatisation.
“Who’s going to want to get help if you’re getting a finger pointed at you on national TV like that? Why would you ever call for help if you’re going to be treated so horribly and I don’t think there’s any model or publicity about compassionate care,” said Bec.
“That’s what we’re trying to promote, that’s what we’re all working on and people don’t hear that part, they see the salacious shows and they hear the mean-spirited news reports but they don’t know that there’s so many of us working behind the scenes that do care and we do have ways to make life improvements. And also, people haven’t seen models for success and that’s really, I think, what we bring to the table, is we show people that you can work on it, we’re there too, we’ve been through it and we want people to see you can do it. It can be done. It’s not helpless.”
However, there are a number of barriers, including misinformation and stigma, that can get in the way of people getting appropriate support.
“There aren’t a lot of people who know how to address the issue, I’d say that’s the top [barrier]. That’s why we’re really happy to do all this outreach work, to make the treatment more accessible to people and to explain what it is because even in the diagnostic manuals in mental health, it was inappropriately listed until 2013,” said Bec.
“I came out about having bipolar disorder in 2003 and incorporated that knowledge into my work. It wasn’t until 2008 that I shared that I had a clutter issue because I felt like there was really strong stigma about it and I was worried about how other people would feel,” said Lee.
“[With] bipolar disorder, there’s plenty of misconceptions about that but, working in the field, joining the local hoarding taskforce and then feeling vulnerable about sharing my story kind of held me back. But once I shared, the opportunity came up to run a peer support group and have it studied to see if it could help people.”
The couple were visiting Australia to train people to deliver their Buried in Treasures Workshop, the peer-led workshop Lee spoke about, for those who live with clutter. It is a peer-led program that supports people to make changes in their lives without judgement, shame or force.
“Dr Randy Frost is a member of our taskforce, one of the authors of Buried in Treasures [the book] and a leading researcher and I ended up essentially collaborating with him to help develop the program and since then, we’ve really been off and running, developing groups that help people,” said Lee.
“So there’s the Buried in Treasures workshop, there’s a group called WRAP for Reducing Clutter, based on Wellness Recovery Action Plan, and [it is in] a spirit of being able to help the next person and empower them to help the next person.”
For Lee and Bec, the goal for successful programs that address hoarding behaviours is supporting people and providing them with options to continue to live their lives with a focus on harm reduction.
“A lot of people need the help but either don’t want it or feel like they don’t need it, but there are health and safety hazards because of the amount of stuff and where it’s placed, so even if somebody isn’t ready to acknowledge that they have a real struggle with this, in order to improve the safety of their home and make it more likely that they’ll keep their tenancy and their family,” said Lee.
“[It is useful] to be able to go in and mitigate the risks, to go in and have a checklist and know what to do in that space to make it safer, safe enough, to pass a safety inspection and that’s something we try to get out there as well, our tools, so that people know what they need to work on, so for a lot of people, whether or not you feel like you have a problem with this, that’s a really useful first step: make it safer, because you need to be in a safer place or else there won’t be a place to be in.”
Living with clutter can also be difficult for the loved ones of the person experiencing hoarding disorder. For Bec, there are some tangible actions that family members and partners can do to make things easier for themselves and their loved ones.
“When it came to hoarding disorder, I felt kind of unseen and unheard and squeezed into a corner, both physically and metaphorically as well, that’s how I felt. And so, I’ve been working with Lee for a few years now in our shared business…showing that there is another side to this story, and together, it becomes a whole, when you get a whole family involved and the partners involved, in getting better. It’s not just a matter of working on the clutter and the person whose possessions are filling the home, but it’s a matter of also helping everyone, really, and working together,” said Bec.
“For other members of the household, I say self-care is key. I always tell people that it’s really important that even if your house doesn’t have room for you to put up a bouquet of flowers, find a place where you can put one stem flower, to show you that beauty and hope can be in your household. Find it in small ways [so] that you can feel good. I also think being able to compromise in the home, and do some limit-setting, so it can work for all people in the home is important, and having some negotiations and trying to retain a loving spirit while going about it,” said Bec.
For the two of them, sharing their personal insights and opening up about their experiences is a key part of connecting with others who may not know how to seek help, or even that there is support available.
“I think having stories like ours out there, people can say “I can relate to that. I’m either living with that person or I am that person. I recognise that there’s someone like me up there, talking about “this is difficult” but it can get better”. And that’s not something that you hear a lot of, so to be able to provide a message that things can get better and show ways to do it, actually have something like the Buried in Treasures workshop available to people that they can facilitate together. It doesn’t require reliance on a mental health system and government funding for people to get together and help each other,” said Lee.
“[Through] our collaboration with people like Randy Frost and other academics, we’ve been able to do a lot of clinical studies so it shows that this is helpful, as helpful, or more helpful, than anything else that’s out there so helping people feel like things can get better and not just saying it, but showing it and educating [people].”
Education is important, not just for those who live with clutter, but also for their friends, family and the general public. Lee spoke about some of the questions that come with experiencing hoarding disorder.
“There’s this cycle that we want to break but there’s also, I think, a really frustrating experience that people have is like “why aren’t you better yet? Where’s the improvement?”” Lee sighs before he continues.
“You wouldn’t say that to people with a lot of other mental health challenges because there’s a different sense of how long it takes to work things out, but with people living with hoarding disorder often there is an underlying trauma history the person needs to work through. You’re working through a lot of different things, a hundred different things.”
For Bec, there is a really important message to share with those who support others in their lives who are experiencing hoarding behaviours.
“The love, don’t lose sight of that while you’re working through it. Things can get really intense in a crowded home and I think it’s really important to keep that vision of love and care forefront in your mind so you see it through all this stuff,” said Bec.
For both of them, it is important to focus on the whole of the person. A person experiencing hoarding disorder is a person, not a hoarder, a stigmatised and unhelpful term for people who are just as complex as anyone else. Giving back and sharing support is also key to Lee and Bec.
“Someone helped me and I just pass it on and that kind of chain of peer support is really important. I also play violin, I love cats and I play a lot of Atari games so my identity isn’t just as someone in recovery but as someone who’s just really living more and more life,” says Lee.
By Tasnim Hossain