Always a Mess: Keeping Clean With Chronic Illness
I didn’t truly realize how messy of a person I was until I went to college and spent more than four years living in small spaces with others. Growing up, my room would always become quickly disorganized, but this was typical teenage behavior no different than my older siblings’. Every other week or so, at my mother’s request, I’d do one big cleanup to reset the space, and then the cycle would continue.
These habits, however, seemed to magnify and unravel once I was living in a compact dorm without assistance from my parents and with a full course load. Quickly, laundry and dishes went unwashed and my belongings were all over the place. And I always had loose, used Kleenex floating from my bunk, past the trash, to the floor. (I know. Gross.) I was lucky that my freshman year roommate was already a close friend rather than a stranger I could scare off.
Being labeled as “messy” is something that has instilled a detached, indescribable sense of shame within me. When trying to defend this title with the logic that daily life is already so exhausting for my body, I instantly feel like people think I’m making an excuse for something that must just be inherently terrible within me. It’s always felt more like a character flaw, not an outcome of uncontrollable circumstances.
It’s taken a lot of inner validation for me to understand the true reasoning behind these habits. While I may indeed be a disorganized person, that trait is undeniably augmented by my life with illness. Many of us who live with chronic illness are familiar with the Spoon Theory, the idea that you start each morning with a given number of spoons, each representing a finite amount of energy. Some days, you may only have enough spoons to get up and into the shower. On other days, there may be a greater abundance of endurance to spare.
My journey with pulmonary hypertension was predictably progressive. But as I declined, I was unwilling to sacrifice dominant aspects of my life. In college, despite being in need of a heart-lung transplant, I maintained my social relationships, excelled in a rigorous nursing program, and even filled my spare time with various jobs — things that swallowed up my spoons.
I did have lots of help, including from my mom who acted as my dedicated “healthcare manager.” She coordinated supply drop-offs, filled pill trays for me every two weeks, and managed all of my appointments. But there was a gray area where I had no assistance — cleaning. As my health worsened, it was the easiest thing to give up.
While my pre-transplant period and immediate recovery brought me to the lowest point of independence I’ve known, I’ve spent the past year climbing back out of that space. It’s been interesting to be in a position of gaining energy rather than losing it.
Post-transplant, I’m still wrapped up in medication and symptom management, and am very much still immersed in the chaos that is day-to-day life with chronic illness. Through all of this, my family will be the first to tell you that I’m still a messy person: My energy level can be unpredictable, and just as before, daily chores are usually the first thing I forsake. But I’m also learning how to develop a schedule and habits that allow for a healthier relationship with my environment.
As I’m reestablishing a work, social, and active life for myself, I’m also working to integrate everyday pick-up. Even just five minutes of putting away items before bed. The goal is not to have a minimalistic, perfectly tidied space. That’s far from who I am as a person. Rather I’m working to stay on top of the chaos so that it doesn’t topple over me as it used to in college.
Finally, I’m practicing grace for myself. Whether other people can fully understand it or not, my daily existence takes up quite a bit more energy than most. While it may be important for my ego to make an effort with these habits, I also know that I’m doing the best I can. This is an issue for so many with physical and mental ailments, and normalizing that concept may help others to develop compassion for these less-than-attractive tendencies.
A lot of people often ask how they can best serve their friends with a chronic illness. I still remember breaking down to tears when I came home after a particularly heartbreaking doctor’s appointment to find that one of my housemates had cleaned my room. If you’re able-bodied, jumping in to wordlessly help a loved one with cleaning or chores on a tough day is truly one of the best gifts you can give. It’s probably something they badly wish they could do for themselves.
Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.