The origins and destructive impact of hoarding disorder

“This room here is particularly bad,” says Melanie S. and opens the white door. Behind him is a mountain of household items, rolls of fabric, unopened paper towel packages, shopping bags, boxes and clothes. On one box, “acrylic paints” was written by hand. On another sits an old doll wearing a dark green skirt. It is difficult for Mélanie S. to enter the room. The disorder almost completely blocks his path. Somewhere beneath the chaos is a desk and an office chair. They are never used. No one can live in this room.

It all started about 25 years ago. Mélanie was then living in Zurich and her children had just moved. “Looking back, it was a difficult step. My two daughters, who were just starting their apprenticeship, left home almost at the same time,” recalls Mélanie. She had difficulty separating from her children. She found it even harder to let go of things that reminded her of her daughters. “I couldn’t throw anything away. I wanted to keep the memories of their childhood, to hold on to them,” she says. The objects gave him support. But his will to hold on to things never went away.

Melanie suffers from compulsive hoarding, also known as hoarding disorder. Affected people have difficulty separating and keeping their belongings in order. In the International Classification of Diseases ICD-11, hoarding disorder is described as being “characterized by an accumulation of possessions that results in cluttering of living spaces to the point that their use or safety is compromised.” According to estimates from the medical community, between 2% and 6% of the European population suffers from this disease.

Started when the children moved

Melanie S. is now in her sixties and lives in the suburbs of Basel. She is divorced from the father of her daughters. She says she doesn’t want to read his full name in the newspaper. She’s too ashamed. She once worked as a cashier, but fell ill with depression. Then the addiction to hoarding began. She has been receiving a disability pension for 20 years. The extent to which Melanie’s hoarding disorder shapes her daily life depends in part on her mental state. “There are better days and worse days. Sometimes I’m so apathetic that I hardly do anything,” she says. But some days, usually Tuesday, she is very active. It’s her laundry and cleaning day. “I actually clean the bathroom every day. It’s very important to me that it’s clean there,” she says.

While still living in Zurich, she received psychological treatment for a time. Since living in Basel, she no longer attends therapy, but continues to take her medication. She found another way to cope with her illness. Here in Basel there is a self-help group that she runs herself under the direction of a city social worker. The group meets twice a month and consists of eight to ten people.

Never throw anything away

The principle of the support group is simple: one person talks about their problem and the others give advice. “I often feel much better afterwards, because I realize I’m not the only one with this problem,” says Mélanie. Compulsive hoarding is usually not the only condition that suffers from it. This is seen in the Basel group, whose participants were diagnosed not only with hoarding disorder, but also with depression, anxiety disorders or alcohol dependence. In many cases, those affected also have a shopping addiction, which reinforces the pathological chaos. They are constantly buying new things, but they rarely throw anything away.

The support group has existed for five years. It is difficult to find new participants, says Mélanie. “There is so much shame. The disease is still very stigmatized in society.”

In the past, some members of the self-help group have used the Swiss service Psyspitex, which offers a special form of outpatient psychiatric care that helps people with mental health problems at home. But some people in the group had bad experiences with this option, says Mélanie: “In the case of one person, they completely emptied the mirror cabinet in the bathroom. This included important medications and eye drops.” Cases like this fuel the sufferers’ greatest fear: that they will be deprived of what they believe will bring them stability.

Usually this is just the tip of the iceberg

Esther Schippert, from Zurich, has been working with people suffering from hoarding disorders since 2016. As a coach, she helps them put their lives in order. When she visits people suffering from the disease, she takes advantage of the first meeting to simply listen to them and explore their living environment. “Just opening the door to a stranger takes a lot of effort,” she says. Customers sometimes take weeks to get back in touch, she said. “It’s for fear that I throw away things that are important to them. But I don’t do that. I want my clients to follow a process with me.”

Schippert is aware of the shame associated with the disease. “There are a lot of prejudices,” she says. “Sick people are seen as lazy or socially disadvantaged. But that’s not true.” She knows from her experience as a stress and resilience coach that hoarding disorder can be found in all social and age groups. “It can affect anyone. From a kindergartener to an academic with a doctorate to an octogenarian in a retirement home.” And it doesn’t just hit those who have already tended toward chaos in their lives, she notes.

Behind the surface mess is always a deeper problem, she says. “Collecting and preserving items gives my clients security and love. By doing this, they are plugging a hole.” It’s usually trauma that triggers the compulsion to reclaim possessions, she says. “For example, there is the child whose mother has had a second baby and who now feels neglected. Or the woman who mourns her deceased husband and cannot part with her clothes. Hoarding is like a protective barrier.”

Schippert says hoarding disorder is often just the tip of the iceberg, a consequence of other illnesses: burnout, depression, anxiety, shopping addiction or dementia. Additionally, sufferers generally have low self-esteem. “Some people sleep in an armchair because they no longer have room in their bed. They leave themselves so little room.”

Patients often only turn to her when they have no other options, she says. Some are waiting to be deported. “Many fear that welfare authorities will one day show up at their door and take their children away.” The disease is associated with constant tension, explains Schippert. “Every day, patients ask themselves the same question: what happens if other people find out?”

Loved ones also suffer from compulsive hoarding

Compulsive hoarding also places a burden on loved ones. “Those who live with people with the disease often find it difficult to separate themselves from the situation,” says Schippert. In Switzerland, there are also very few places where you can ask for help. It is for this reason that last year she founded an association for people suffering from hoarding disorders and their loved ones. Relatives can find out and describe their situation during a walk – outside the home.

Mélanie also receives frequent calls from relatives of collectors. “This disorder is difficult to understand for people who do not suffer from it themselves. From the outside, we say to ourselves: it must not be that difficult to wash the dishes or put away your clothes every day. But this represents a major challenge for people with this disease,” she says. Mélanie now lives with her new partner. “The situation is often difficult for him. But he supports me as much as he can.”

That makes the group’s mutual support all the more important, she said. People who have suffered from the disorder find it easier to help each other, she says. She adds: “It’s easier to clean up after others than after yourself.”

Latest articles

Global reporting. Swiss quality journalism.

In an increasingly polarized media market, the NZZ, based in Switzerland, offers a critical and factual outside perspective. We are not in the news business. We provide thoughtful, well-researched stories and analysis that go beyond the headlines to explain relevant events in the United States, Europe and around the world. To carry out this work, the NZZ maintains a world-leading network of expert journalists, who work closely with our main editorial office in Zurich.

Subscribe to our free newsletter or follow us on Twitter, Facebook Or WhatsApp.