I Am Not a Hoarder: How Living with a Chronic Illness Differs from Hoarding

When I was very sick in 2010, I was misdiagnosed with hoarding.

I rejected the diagnosis then, and I reject the diagnosis now.

Although I did have anxiety about getting rid of things that were important to me (like the perfume that my grandmother wore –she died in 1993– or the single doll I saved from my childhood), I never had anxiety about being without possessions –in fact, minimalism appeals to me.

It was more anxiety over the decisions of what to keep and what to get rid –that would overwhelm me.

That, combined with my general low energy created an environment which looked very much like hoarding but was very different.

I know because I grew up with a grandmother who was a hoarder, and I saw how she acted with her possessions –even things that were broken, water damaged, and unfixable she couldn’t bear to part with.

I knew that my issues were not the same.

Although I did have perfection issues that I had to work through which I have discussed in other posts, I did not have clinical OCD hoarding.

The next mental health professional I saw agreed that I did not have it and removed it from my chart.

It was around then that I found that many people who have chronic illnesses get erroneously diagnosed with hoarding simply because they lack the energy or clarity of mind to keep their houses clean.

In my defense –and theirs– I am listing here the differences between how I behaved and how a hoarder would behave.

The good news is that you can help people with chronic illnesses because they actually want to be helped –unlike many hoarders.

That’s not to say that chronically ill people cannot be hoarders, only that they aren’t the same thing.

Hoarding vs. Chronic Illness

Hoarding is a form of OCD; I am not OCD although I have struggled with some OCD tendencies due to my ADHD, usually about germs and trying to do things perfectly.

Hoarders consider their possessions precious; I considered the excess possessions a nuisance.

Hoarders, when forced to choose, will usually choose their possessions over people; I wanted the stuff out of the way to make it less of a burden on me and those I love.

Hoarders fill up every space they can with junk and useless things; I actually had plans to use the items I purchased but due to my unpredictable energy and ADHD would always overestimate how much time and energy I had.

The possessions make hoarders feel better –happy; the possessions made me feel stressed and depressed.

For hoarders, whatever enters the house never leaves; I was constantly getting rid of things, but couldn’t keep up with the mess because I was not getting rid of enough fast enough due to decision paralysis and low energy –even when I decided to get rid of things I didn’t have the energy to actually remove them from the house and find them new homes.

Hoarders make goat trails through their floor to ceiling piles; I did not have that much stuff even at my worst.

Hoarders usually learn to keep possessions as way to survived some trauma; my problems only started when I got sick after my second son was born, and before that I was able to maintain (although I have never been extremely tidy and it took my way more energy than average to keep a house clean since I am more creative and less type A).

Hoarding is a way to increase isolation as you build relationships with stuff instead of people; I viewed my possessions as getting in the way of my relationships with those I cared about.

Getting rid of their possessions causes hoarders a great deal of anxiety; keeping my possessions was very stressful, but for a long time I lacked the ability to sort through the items that needed to be sorted.

When people try to help hoarders, they resent it; when I was offered help, I was enthusiastic and grateful, and I jumped on it allowing a group of 10 women to clear out my entire house in the span of about 6 hours –I was throwing things out as fast as they could bring it to me: “toss it,” “get rid of it,” “do you want it? keep it!”

When hoarders are forced to get rid of things they fight tooth and nail; I was throwing things away, giving them away, and even burning things just to have them out of the house when I finally had the manpower in my house to help me sort things.

If hoarders aren’t supervised, they will start hoarding again; I have managed to not bring new things into my house after I had help to clean the house (even though I still struggle to keep it tidy due to my energy issues).

Hoarders are proud of their collections even if it makes them live in squalor; I was so embarrassed and took no pride in any part of it.

Hoarders are in denial that there is anything wrong with collecting thing; I was in denial that I wouldn’t have the energy to do and make the things I wanted to do –I was always expecting to wake up the next morning with tons of energy and that never happened.

Hoarders think they have to do everything perfectly; I admit to having this issue in the past but not anymore as I have come to grips with needing to do whatever works even if it is not perfect.

Hoarders usually don’t want help; I wanted help but didn’t know how to ask for it.

Even when hoarders don’t have money they keep buying more stuff; I never bought things when we didn’t have money just because I couldn’t stop buying things.

They feel like their stuff is people and like they are saving the person/stuff; I felt like I needed to be saved from my stuff.

Throwing things away is scary for a hoarder; being overrun by my stuff was terrifying.

Hoarders nearly always have a relative who is a hoarder; I do have a relative that was a hoarder, but that doesn’t predestine me to be a hoarder.

Hoarding is like armor to protect the person, a fortress to not let people in and to hold onto things that they feel like they are losing; I was upset that the stuff was causing problems in my relationships and didn’t want that to be the case so much so that I was determined to change something.

To a hoarder, things are more important than relationships; relationships are way more important than anything that I own.

Hoarders need expert help to stop hoarding; I stopped bringing things into our home by changing my expectations of what I could actually handle and maintain –all by myself –because I had a better understanding of my health and abilities.

For a hoarder, the stuff is their life; the stuff was ruining my life, and I was so over having too many things.

Hoarding is chronic, and it is not easy to and rarely successful to cure it; overnight, I stopped bringing things into the house once I accepted that I wasn’t going to get better and magically wake up tomorrow to have the energy to sew, craft, or interior decorate –it was not easy to accept that this was my realityF.

For a hoarder, addressing it is more stressful than leaving it there; for me, leaving the possessions was more stressful than addressing it.

[This information is based on my understanding of hoarding and may not represent every case.]

This is my explanation of why those of us who have chronic illnesses aren’t automatically hoarders.

Even if it looks kinda like hoarding, it has difference symptoms and causes.

In the case of chronic illness, it is not a pathological need to keep bringing things into the house, so it is easier to address.

And, good news, it is easier to fix than hoarding –you just need a better system.

And maybe some help to implement that system.

I am indebted to the women who helped me clear out my house –such a great service they did for me.

But, don’t confuse being too sick to clean your house with hoarding because it is not the same thing.


Sarah Forbes


4 thoughts on “I Am Not a Hoarder: How Living with a Chronic Illness Differs from Hoarding”

  1. Thank you, thank you, thank you for putting down these words. It has genuinely brought me to tears to know that I am not alone. You have made a difference in my life today.

    1. Jessica, (((((hugs))))) You are not alone! ❤❤❤ I’m honored that you found my article helpful. ❤

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