Living with a disabling illness, such as Myalgic Encephalomyelitis (ME) and Long COVID, can introduce unique challenges into your daily life when you're either the person with the illness or their caregiver. One of these challenges is what we'll call "disability clutter." This clutter encompasses both the accumulation of items from a previous lifestyle before the illness and the new items that accumulate as you seek to manage the health condition. In this post, we'll explore the emotional aspect of "disability clutter" -- the emotional weight that comes with adapting to your/your loved one's new reality. In the future, we'll address practical hands-on steps of addressing "disability clutter," so you can foster a sense of harmony and effectiveness in your living space. My friend and fellow ME caregiver Ashley Kim came up with these steps using the following ABC framework: Acknowledge Your Situation, Breakdown the Tasks, and Change with Compassion.
Acknowledge Your Situation
Recognize Your Situation Has Changed. The first step to managing disability clutter is acknowledging your life has changed and accepting the limitations the illness has placed on your life. This includes recognizing the activities you / your loved one can no longer do and learning to let go of them. It's okay to mourn these losses, but also essential to find a place of acceptance.
Realize There Is an Emotional Aspect. Understand that it's normal to have "disability clutter" due to the emotionally challenging aspects of dealing with the illness. Do not beat yourself up for having more clutter than other families.
Breakdown the Tasks
Surrender and Edit Down: We often hold onto items that were once part of our previous lifestyle, hoping that we'll be able to use them again. Acknowledge what you can realistically use now and surrender what no longer serves you. This might involve parting with adventure gear or professional attire that no longer fits your life. Remember someone else can appreciate and actively use them.
Overcoming Overwhelm: Disability can create overwhelming circumstances, making housekeeping tasks seem insurmountable. Understand that your life is challenging on many levels, and it's OK to give yourself grace when it comes to keeping your living space in perfect order. To overcome the overwhelm, a professional home organizer I know recommends putting on some fun music to declutter or organize just one corner of a room for 15-20 minutes each week. The speed-cleaning session will give you forward momentum and help you feel you've made some progress!
Change with Compassion
Shift Your Mindset: Rather than viewing the changes brought by disability as pure loss, try to see them as opportunities for growth and new experiences. This shift in mindset can empower you to embrace your current reality and find joy in the present.
Internal Dialogue: The way you talk to yourself matters. Replace self-criticism with self-compassion. Instead of berating yourself for not being able to accomplish certain tasks, acknowledge your efforts and celebrate small victories. For example, you can share your small victories with an accountability buddy, perhaps another friend who's also looking to address their clutter in 15-20 minute speed-cleaning sessions on a weekly basis.
Communication and Expectations: Communicate openly with everyone in the family about your goals and reasons for wanting to declutter your household. You can share your vision of having a calmer, more nurturing environment for the entire family. Set clear expectations for what you can and cannot do. If possible, involve your loved one with the illness in low-energy ways to foster a sense of control and connection.
During our recent support group meeting, Ashley asked us to reflect on these questions:
What did I/my loved one/we used to do that we no longer can do?
What new gear have you added to your household due to ME/CFS/Long COVID/other health conditions?
What clutter in our lives is frustrating?
What chores or decluttering strategies are relatively easy?
What is fun?
Who are my allies and/or who will go to bat for us?
Who are my companions (human and non-human, like podcasts or audiobooks)? Who or what makes things more enjoyable just by being present and not necessarily by helping with the work?
What negative thoughts/feelings come up when you are trying to declutter (shame, burnout, etc.)?
What clutter is most important to both you and your person to handle?
And some support group members recommended resources that have helped them:
- Paul: I've found the book “How to Keep House While Drowning” by KC Davis to be excellent.
- Joy: Podcast/YouTube channel/blog from Dana K White with titles like "How to Manage Your Home Without Losing Your Mind". She offers compassion and support for families with limitations of time, physical capability, etc.
We hope some of these tips will help you foster a sense of harmony and effectiveness in your living space.
