8-minute read time.
Today’s post is another rough first draft of a piece I recently submitted for another class. Again, once I get comments on this piece, I’ll share them and edit them to improve the story. This article contains content you might have seen in my other pieces, namely the explainer I wrote about hoarding disorder. The difference is that, with the explainer, information was presented in more factual and bulleted blocks, whereas this piece weaves it into the narrative. I also used quotes from the same interviews I have used in other pieces but made sure not to repeat them from piece to piece. Enjoy!
My mother’s hoarding condition haunts me. I can’t remember a time in my life when my mother’s space was clean. Sometimes, I look back at pictures of my parents when they were still together, right after they had me, and their house was relatively clean—a glimpse of a time I never knew. For as long as I can remember, from my earliest memories as a toddler to now, my mother has struggled with hoarding. And with my mother’s hoarding came a profound misunderstanding that affected our relationship while I lived with her and forever changed my life.
I struggled to understand that what my mother did while I was growing up wasn’t her fault. I didn’t know what it was, how to define it, or what to call it. It was not until very late in my life that I heard and fathomed the term “hoarding.”
I didn’t know what the word encompassed for a long time. Now I know that hoarding means more than just creating clutter; it’s a complex and deeply personal mental health struggle affecting everyone in its orbit. It took me a long time to get to this understanding because living in a hoarded space impacted me in ways I didn’t fully understand until my teenage years and adulthood, when I became more aware of how different my home life was from everyone else’s. It shaped my relationship with my mother, colored my social life, and created a unique set of challenges that few could understand, including how to label or define what was going on. My journey to make sense of her hoarding—and to separate the person I love from the chaos around us—has been a complicated and ongoing process. Along the way, I’ve had to confront not only the misunderstandings others have about hoarding and how to label it but also my own conflicting feelings about it.
How do you describe to someone that you live in a hoarded home? How do you paint a picture of the bug infestations, the intense odors, and the piles of items that block walkways and doorways? My struggle throughout my childhood, especially when it came to discussing my life with a therapist, was finding the right words to describe my mother’s behavior. When I was old enough to read, I attempted to research similar experiences of mental health conditions. I read books. I scrolled through websites. I remember that I once found a webpage for Child Protective Services that stated that what I was going through was neglect, which the Massachusetts Department of Children and Families defines as “failure by a caregiver, either deliberately or through negligence or inability, to take those actions necessary to provide a child with minimally adequate food, clothing, shelter, medical care, supervision, emotional stability and growth, or other essential care,” (1). This definition didn’t seem right to me. Yes, I fit the criteria in some ways. Still, at the same time, I felt as if my mother’s inability to provide comfortable shelter was because of a mentally “handicapping condition,” one of the exclusionary traits considered when determining whether a case qualifies as neglect. I felt immense frustration and confusion because there wasn’t a straightforward answer or solution. My mother’s condition didn’t fit easily into what I knew about mental health at the time.
As I got older, and especially as I have been able to research the condition by interviewing other children of hoarders, I have come to a better understanding. Although each person I interviewed answered the same question distinctly from one another, they all had a similar idea of how to define hoarding:
“An extreme connection to a lot of different objects, and the inability to part with stuff, putting too much emotional weight and connection to things that most people find meaningless,” said Emma.
“An unwillingness to get rid of items that are no longer useful and that interfere with your life and affect your living conditions,” said TN.
“I define hoarding as people who compulsively acquire things and can’t get rid of things, even when it doesn’t make any sense to keep them, and they just keep things that have no purpose. They can’t stop collecting and keeping things. It’s different than collecting. With hoarding, I just find no pride of place,” said Penelope*.
“Hoarding is the impulsive, materialistic desire to distract yourself from what you don’t have,” said Matthew.
Although slightly different, these definitions aren’t that unlike the clinical definition of hoarding disorder as given by the DSM-5: “Persistent difficulty discarding or parting with possessions, regardless of their actual value” (3). According to the DSM-5, the difficulty of hoarding originates from a perceived need to hold onto items and the accompanying mental distress when forced to get rid of them. This leads to clutter and disarray that compromises living spaces and their functionality, often requiring intervention from others, such as family members like myself. Hoarding disorder causes “significant distress or impairment” in social, occupational, or other vital areas, including maintaining a safe environment (3). It is distinct from other medical or psychological conditions, such as OCD, major depressive disorder, or schizophrenia, and can include features like excessive acquisition and varying levels of insight. Insight levels range from recognizing hoarding as a problem (good or fair insight) to being completely unaware or delusional about its impact (absent insight). Approximately 80–90% of individuals with hoarding disorder also excessively acquire items beyond their space’s capacity. It is estimated that 1.5% to 6% of the world’s population has a hoarding disorder. It’s hard to narrow that number down because of problems or limitations in how the data is collected, analyzed, and interpreted, according to researchers at the Sheffield Health and Social Care NHS Foundation Trust (2).
To truly understand these definitions and form one of my own, I have had to reflect on my experiences, including moments when I recognized that my mother’s behavior was a struggle beyond her control. For instance, I recall times when her emotions seemed to overflow, not as a deliberate choice but as an uncontrollable response to the challenge at hand. There have been several moments when a family member or I touched her items, and she has regressed to an almost child-like state of sullenness, silence, or whining. These occasions were hard to comprehend in my youth, but as I grew older, I began to see them through a lens of begrudging understanding. My mother’s hoarding disorder continues to impact me, but I’ve learned to focus on our relationship beyond her disorder. Although my emotions or boundaries sometimes get the better of me, this realization has shaped my ability to understand and define what she is going through.
In a way, it’s amusing to hear people casually say they’re a hoarder for holding onto a pair of shoes too long. Yet, for those who genuinely struggle with hoarding disorder, it’s a far more complex experience, one that is linked intrinsically to deep emotions, memories, and trauma that go well beyond simply keeping and acquiring material possessions. This contrast serves as a reminder of how easily we as a society can oversimplify struggles that aren’t fully understood.
* This source was given a pseudonym to protect their anonymity because of issues with housing insecurity and the danger of being homeless if exposed.
References
1. Massachusetts Department of Children and Families. Definitions of Abuse and Neglect. Accessed December 4, 2024. https://www.mass.gov/info-details/definitions-of-abuse-and-neglect.
2. Postlethwaite A, Kellett S, Mataix-Cols D. Prevalence of Hoarding Disorder: A systematic review and meta-analysis. J Affect Disord. 2019 Sep 1;256:309-316. doi: 10.1016/j.jad.2019.06.004. Epub 2019 Jun 4. PMID: 31200169.
3. Substance Abuse and Mental Health Services Administration. Impact of the DSM-IV to DSM-5 Changes on the National Survey on Drug Use and Health [Internet]. Rockville (MD): Substance Abuse and Mental Health Services Administration (US); 2016 Jun. Table 3.29, DSM-5 Hoarding Disorder. Available from: https://www.ncbi.nlm.nih.gov/books/NBK519704/table/ch3.t29/
