At a Second Cup on the corner of King West and John streets, Carol* sits across from me at a back table in a black blazer and white blouse, her dark jeans pulling the look together in a smart-casual sort of way. She’s somewhat tentative, looking down before making eye contact, sipping on the chilled green tea before her while carefully revealing pieces of a story that many are too ashamed to tell. She flips her cellphone intermittingly, taking a call, checking the time, not wanting to be away too long from the design firm where she works as an interior designer with a penchant for simple spaces. And yet herein lies the disparity: this shipshape woman – blond hair bordering flushed cheeks and an emerald gaze, lined precisely with eyeliner, framed with dainty eyeglasses – can’t do for herself what she does for others. Her home instead is a blueprint for an underground psychopathological design: tottering stacks of magazines in her living room and heaps of laundry in her bedroom; box after crowded box of paperwork – up to eight of them in her dining room – scores of clothes in the basement meant to be given to charity, receipts older than seven years, and three-months-worth of recyclables plighted to her porch. The scenario leaves one perplexed: how could a person – particularly one who leads a career in organized functional spaces – fall so hard upon an Achilles heel of scarce systemization? “I design beautiful spaces for people and I love minimalism,” says Carol. She chews her lower lip. “But I’m like a shoemaker who has the worst shoes.”
While TV shows such as Hoarders and Hoarding: Buried Alive began to shed light on people struggling to rehabilitate from pathological collecting, Dr. Peggy Richter, director of the Clinic for OCD and Related Disorders at the Sunnybrook Health Sciences Centre in Toronto, was gaining interest on an illness whose off-air frequency was grossly underestimated. “There are fairly robust statistics that are now emerging, several U.S. studies, that show prevalence estimates of 4.6 to 5.9 per cent,” says the internationally recognized expert in obsessive-compulsive disorder (OCD), a mental illness fuelled by anxiety and repetitive behaviour. For years, hoarding was viewed as one of its subtypes, but with new research spearheading clarity in the psychiatric community, the quandary is now set to stand alone under an umbrella of OCD conditions in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM), the psychiatric bible used throughout North America to diagnose mental disorders. “Compulsive hoarding is definitely an illness, that much is very clear,” says Dr. Richter. “It really is a syndrome that is quite distinct, quite different from the normal range of disorganized behaviour or clutter … There is a significant portion of hoarders who have OCD, where hoarding is just one feature. But there are myriads of unrecognized individuals out there in the community who suffer from hugely problematic compulsive hoarding who may not have OCD as part of it.”
We have all, at one point or another, developed deep affections to possessions – a late grandmother’s brooch, a coin collection, trophies stored in boxes on shelves in our garages. Collecting tangible fragments of our memories and the sentimental qualities attached to them is a normal human pastime, helping us to shape and remember our history. Hoarding, or compulsive hoarding, however, travels much deeper than that, attaching emotionally intense feelings to anything from a gum wrapper to an old photo. It is identified by an extreme accumulation of objects that affect our ability to function in our spaces, and the inability to live without these accumulated possessions. “Everyone’s a little different. For me, it’s not about randomly collecting things, it’s about that I have to check things before I let them go,” says Carol. This pattern of thought – often expressed by hoarders – began when Carol was in her mid-20s. For as long as she can remember, her life has always been accompanied by a strong inclination to achieve perfection. As a child, she was perpetually orderly, her methodical ways extending into adulthood and throughout her home. She describes how in her kitchen herb and tomato jars are carefully organized atop shelves; and in her bedroom, shirts in the closet are carefully compartmentalized in order of colour. Yet amongst these glimpses of organization are barefaced snapshots of a woman besieged by her belongings. “Some people would say, ‘Oh, who cares, it’s not a big deal.’ I would say, ‘Oh, my, God.’ How can you throw stuff out and not know what’s in it?” With spring-cleaning around the corner, she rationalizes that she’d rather enroll in a dance class than waste her time sorting through every plastic bottle and can that suffocates her home’s entrance – even after her neighbours have complained about the state of her porch to city officials. The idea of having to discard and risk losing something valuable in the process impedes her. “My doctor asked me, ‘What’s the worst that can happen?’ And I responded, ‘Well, I can lose a [pay] cheque.’ ‘But you can always get another one.’ ‘But maybe I won’t be able to identify that cheque.’” I ask her how the problem started. “That’s hard to identify,” she says. “I had a good life, good parents. I think it was just in some cases a small erosion of self-esteem.”
In 1993, at a time when little was known about hoarding, Dr. Randy Frost, a professor of psychology at Smith College in the U.S., was breaking new ground in what would set the foundation of what we know today about hoarding. What the internationally known hoarding expert discovered was that the common themes driving the illness were identity issues, a fear of waste, the allure of opportunity and comfort. Working with fellow psychologists that included Gail Steketee, Rachel C. Gross and Tamara L. Hartl, Dr. Frost explains that hoarders – even those willing to rehabilitate – have difficulties in succinctly arranging their stuff. “We think that there are some fundamental problems with the way in which information [in the brain] is processed, and there are a couple of different information-processing deficits in the ability to categorize,” says Dr. Frost, co-author of Stuff: Compulsive Hoarding and the Meaning of Things. The book, which answers the question of “what happens when our stuff starts to own us,” includes the earliest reference of hoarding found in Dante Alighieri’s The Inferno, as well as the legendary story of the Collyer brothers, siblings found dead amongst heaps of belongings in their New York City brownstone. It also details Dr. Frost’s fascinating experience with Irene, a woman he refers to as a hoarder “prototype” because she had almost all of the symptoms – intense perfectionism, indecisiveness, the belief that possessions carry emotional significance and the use of them as memory aids. “Each object is seen as so unique and so different than every other object that it can’t be put together and organized in a group. And that’s how most of us live – we live categorically. We put the electricity bill with the other bills in a place where we know that category is located. If we want to find it, we go to that location for category. But for people like Irene, she lives visually and spatially, so the electricity bill goes on top of the pile, a little bit to the left, and she creates a mental map of where that’s located. Now to find it, she has to remember where it is on that map. You can see why for people who hoard, it’s an intense reaction when someone messes with their pile of stuff: once you move things around in the pile, that mental map is all gone, and now it’s just a pile and you don’t know what’s there.” It’s still unclear, however, why people who share Irene’s personality traits fall into a downward spiral that researchers say can often lead to the breakup of family, divorce and estrangement.
Recent studies suggest that a man is more likely to hoard than a woman, and that heritability may be a factor. Yet the genetic component doesn’t necessarily explain the attachment of things. “We know that people who hoard describe their early family life as kind of cold and lacking in warmth. [Nature and nurture] may go together to create this, but we don’t really know to what extent it is genetic,” says Dr. Frost. Depression, social phobia and generalized anxiety disorder characterized by worry are common in hoarders, a condition that spans any age group. Some cases can occur in children as young as four.
A few years ago, Carol started to become unnerved by her worrisome nature and inability to let things go. She had been suffering for half her life, ashamed to speak out on a problem that painted hoarders as unclean and slothful. “It’s embarrassing when a friend or family member comes over. I personally feel judged,” says Carol, openly distressed on how to arrange the eight boxes of paperwork on her dining room table for a weekend dinner she’s hosting for a friend. “I think overtime, people learn that it’s not you, it’s the trouble in your life, and that you’re trying to work through it. It’s embarrassing; there’s always judgment.” One night, she came across a hoarding documentary on television that prompted her to come up with the courage to seek help from a professional. After researching the few options available for her condition, she came across Dr. Richter, one of a handful of psychiatrists in Toronto that specializes in the treatment of hoarding. Over 230 people sit idle on her two-year wait list.
Despite an alarming prevalence rate, there is currently no established, integrated program or organization in Toronto and surrounding areas to directly and solely assist hoarders.
Dr. Richter says that the current lack of recognition is making the access of treatment difficult.
Cheryl Perera, director of new ventures and community programs at the non-profit charitable organization VHA Home Healthcare, agrees. “What we find, certainly in Toronto – and I’m sure it’s the same case in Vaughan and other areas as well – is that there is a patchwork of services: people can do pieces of work, but there isn’t always a continuous one-stop place where you can go to get help for someone who is hoarding. [There are] social workers calling all over the place desperately asking, ‘What can I do for this person?’” says Perera, who is also the chairwoman of the Toronto Hoarding Coalition, an association comprised of 60 organizations that include Toronto Emergency Medical Services (EMS) and Toronto Public Health. The group’s mission is to ensure that hoarders in the city of Toronto have access to integrated services, but because of no funding or resources, the group treads upon an uphill road. “We don’t expect that the city is going to come up with funds to support a comprehensive hoarding program, but we expect some dollars to setup our service and create partnerships,” says Perera. Toronto Public Health does engage in investigations related to hoarding, but Reg Ayre, a manager of its healthy environment program, explains that because “there is still a discrepancy on whether hoarding is a mental health condition or a lifestyle,” Toronto Public Health members and affiliates are banging their heads together to come up with an integrated plan. On June 1st, 2012, VHA Home Healthcare and Sunnybrook Health Sciences Centre are set to host a conference on hoarding, with proceeds going towards the Toronto Hoarding Coalition. On June 7 and 8th, a hoarding forum held by the Ontario Non-Profit Housing Association at Crowne Plaza Toronto Airport will feature keynote speaker Dr. Frost.
It can take up to nine months to see changes in the behaviour of a hoarder, says Perera, and that’s only if the individual is ready to confront his or her problem and accept professional help. Amongst its many services, VHA offers Extreme Cleaning, a program meant for those who are unable to take care of their homes due to declining physical abilities or mental health issues. VHA’s occupational therapists routinely come across hoarded homes, but “Sometimes they don’t let us in,” says Perera. While it’s more common for a hoarder facing eviction (their stuff may pose risk of fire or floods) to allow specialists to de-clutter their home, clean-outs don’t usually go as expected. The loss of items may spur intense anxiety or anger, and in some cases, hoarders quickly go back to replenishing their homes with objects. In the case of Irene, Dr. Frost witnessed remarkable changes, yet sadly, her slow deterioration. “She was able to maintain her house in pretty good shape for a number of years, and then her children left for school and she was alone in the house. Whenever that happens, we tend to find that the hoarding gets worse. Now she’s struggling to put things back together.”
Right now, the best treatment for hoarding is cognitive behavioural therapy (a specific short-term form of psychotherapy). Attempts of mitigating the disorder include antidepressants used to treat OCD, but research has shown inadequate levels of effectiveness in hoarding patients. With a limited availability of services from a doctor covered by Ontario Health Insurance (OHIP), and appointments with specialists in the field costing up to $250, keeping up with treatment can bring about financial strain. “You’re left on your own, and I’m sick and tired of panicking. When you’re in a program, you don’t do it as much,” says Carol, who found that her sessions with Dr. Richter, which included cognitive behavioural therapy, helped to ease the panic she felt when trying to place her recyclables on the curb.
It’s time that Carol get back to her work as an interior designer, creating spaces of simplicity with a technique that welcomes her clients to a style stripped down to its essentials. As she readies herself to push through the throng of businesspeople rushing through the streets, she knows that tottering stacks of magazines and heaps of laundry and box after box of paperwork and bags of old clothes await her at home. And her fear of loss is palpable. “There are days when it’s ripping you apart. It’s debilitating.”