If you have ever visited a disabled or chronically ill person’s home, you may have wondered how they keep it so immaculate. More likely, though, you may have wondered why they have such a messy house.
The truth is, there are a lot of reasons – and whether you are worried about a friend or about your own home’s shortcomings, those reasons are usually valid and totally normal.
Chronic Illness Overwhelm
These days, everybody has a lot on their plates. Even before the COVID-19 pandemic, people were balancing work, home life with family and children, social engagements, and trying to fit housework in on top of it all. Throw in a pandemic and it all became that much harder.
If you suffer from chronic illness or are disabled, you probably already realize how much harder everyday life can be for people with relatively few “spoons”. We have less time in the day to get everything done and less strength and energy to do it with.
There may also be entire days or weeks that we cannot get out of bed or do much of anything, which means that everything but the absolute essentials often has to be left to wait or delegated to another family member.
This can cause a serious case of overwhelm. Chronically ill people are trying to balance all the same responsibilities as people with better health, less pain, and more energy, while also dealing with the social stigma of not being able to meet those demands.
At the end of the day, it should be enough that jobs are done, children are cared for, and everyone made it through the day, but for most of us, that simply is not the case. We are overwhelmed by what needs to be done and the percentage of it which we simply cannot do.
I know that when my house is messy, I feel bad about myself as an adult, a wife, and a mother. I have dealt with more than a few snide comments from friends and family alike about how I’m not doing enough to keep my home clean, or how another family member could clean their home even after their surgery.
Good for them! They are not me – and that is exactly the point I am still trying to convince my extended family of.
Prioritizing Self Care and Care of the Family
As you probably already know if you are here, people with chronic illness and disability often refer to ourselves as “spoonies“. The spoons represent how much energy we have each day, and we have significantly fewer than people who are not facing the same health hurdles. Given that these “spoons” are rationed, we often have to make difficult decisions regarding their use.
If you only have enough spoons for cleaning your house or providing dinner and baths for your children, the latter is the obvious choice. You will clean tomorrow, right?
Maybe. Or maybe the next day you will have to choose between using those spoons for cleaning your messy house or helping your children with their homework, or taking them to practice, or to a doctor’s appointment. The choices are obvious ones, but they can also be painful to make, knowing that you will have to go yet another day without getting everything done.
It is an endless cycle.
Homes do not stay clean and chores always need done, but if you constantly have to choose between doing these things and other, more important duties, those chores get pushed back again and again until they’re almost insurmountable. My often-messy house is sometimes called the “great laundry mountains” because there are piles of it everywhere, no matter how much I try to catch up.
Sure, a disabled or chronically ill person can push themselves through the pain and fatigue to try to catch up on all of their chores.
I used to watch my mother do this on Saturdays, then take all day Sunday just trying to recover enough energy to return to work the next day. She was good at it, but it eventually took its toll on her. It is also a balancing act that I am just not as good at pulling off, and I am not even sure my body is capable of anymore.
Not Enough Help
If you think the next thing I am going to say is that the spouses and family members of spoonies are all terrible people who do not pitch in at home enough, you are a little mistaken.
Yes, I do absolutely think that people in these para-caregiving roles often overlook the ways that they ask too much of chronically ill and disabled people – but they may also be exhausted, too.
My husband is my primary caregiver. Because of my limited abilities, he has also stepped into the role of the more physically involved parent, taking the kids out of the house, helping them with homework, and cooking for and cleaning up after them. He does this for our pets, as well – and he obviously has to care for himself. On top of all of this, he is our primary breadwinner, at least for the foreseeable future.
That’s a lot of weight on one person’s shoulders.
He gets very little recognition for all that he does, a sad side effect of caring for a wife who doesn’t “look sick” but is very limited in what she can do.
So, is it any wonder that we have a messy house? At the end of the day, once we have made sure our kids are fed, clean, clothed, and educated, doing the laundry or tidying up the living room just falls to the wayside.
I hope these points will stick with you when you worry about your friend or loved one with chronic illness and a messy house. I hope you will remember that they are not slobs, not lazy, not “letting themselves go” – they are just trying to survive a challenging season of their lives, and your judgement is doing absolutely nothing to help them.
If you are really concerned, politely offer to help them with chores. If they say no, respect that and mind your own business afterward. I promise you, they do not need more reasons to feel bad.
To all of my chronic illness warriors and disabled friends, the next time you look around at your home and see an intimidating, upsetting, embarrassing mess, I urge you to remember that you are doing the best that you can. You are not less of a person, an adult, a parent, or a partner because of what you can or cannot do on any given day.
Your home may be messy, but it is full of love. That is more than enough.