How Being Stuck at Home Due to Chronic Illness Became My Greatest Adventure
Being unable to leave your home is not a fun experience. I’ve experienced much of the worst suffering of my life while being stuck at home due to chronic illness, some of which were the reasons why I couldn’t leave home and some of it directly related to the experience of being limited to the inside of my home. I’m going to be focusing on the positives in this article, but I am in no way discounting or minimizing how difficult this experience has been.
When I was first unable to leave home because of my physical symptoms, I abruptly dropped a lot of my people-pleasing habits. I couldn’t go where people wanted me to be, I couldn’t do what people wanted me to do, and there was literally nothing more I could do to change that. I tried to explain to the best of my ability, but when someone could not meet me where I was, I had to let them go. I couldn’t please my family, my friends, or the systems that asked me to jump through hoops to prove my suffering. The only way to escape from falling into a pit of despair, self-loathing, and self-pity was to focus on the one person I had left to please — myself. I gave myself permission to prioritize myself for the very first time in my life.
I began to investigate what I needed, what I liked, what I wanted, and what I was capable of. I began to build, brick by brick, a new life that I envisioned for myself. I aimed for quality of life, not seeking to change my situation entirely, but taking care of myself as best I could and working to improve some aspects of my life. I worked hard to learn the best methods of working with my limitations. I found ways to contribute to the household, to create, to feel productive, and feel connected to my friends. One of my proudest achievements from this period of time was transcribing the CBT/DBT 5 Week program (which I’d completed just months prior to losing my mobility) into a free mental health blog that anyone could access.
At a certain point, I realized my quality of life would not improve further in the location that I was living. The whole building was inaccessible so I was trapped inside the apartment, and I was isolated from community supports that could have helped me. I jumped at the chance to move in with a friend in a nice house, but it wasn’t a good fit and I ended up trapped in my room just like I had been in the apartment. I quickly found a new place to live with different people, but we were unlucky and the suite above us was used for criminal activity. When we began to fear for our safety, we abandoned that place.
This series of moves was incredibly difficult, put awful stressors on my health, and left me feeling as though safe, accessible housing would be impossible to find. But during the two weeks we spent transient after abandoning the unsafe residence, we found a secure house to rent, no attached neighbors, and with a reasonable landlord. Though the house is average-sized, rather old, and a little dilapidated, I felt as though we had moved into a mansion. I cannot understate how important an accessible, safe, clean, and supportive environment is when you have to be at home due to chronic illness. The majority of the time, my house is my whole world. Having a space I can move around in accessibly has improved my capacity for helping around the house and caring for myself independently. Living in a home that is clean and free of mold or dusty vents reduces the inflammation that exasperates so many of my symptoms.
Finding the right housemates is also important. I don’t have home care, so I rely on the compassion and ability of my housemates to help me with a variety of disability-related tasks. It’s also important to me to live with trauma-informed folks as I work through my recovery and towards inner healing. Physical safety and security are also especially important when you spend so much time in your house. I don’t feel that I have the kind of physical security that would make me feel most safe, but I am in a significantly more secure situation than in previous homes.
Coincidentally, I moved into this more accessible, secure, and supportive living situation about a month before the first wave of COVID and subsequent social distancing. This set me up for success during the extended lockdowns were going out, socializing, and patronizing businesses were not an option. While I had very limited casual socialization for the previous few years due to my chronic illness, I was not able to distance myself from the constant expectations of going to appointments, attending programs, and proving my pain in order to qualify for the financial assistance I receive. These types of social contact in particular constantly aggravated my CPTSD symptoms and caused my physical chronic symptoms to flare in correlation with the stress of being triggered. The new expectation to stay home and avoid any type of socialization for health and safety reasons gave me the permission I needed to deeply focus inwards and invest even more of my energy into myself and my home.
Being restricted to my home before the pandemic prepared me well for a life in lockdown, but more importantly, it prepared me to live the rest of my life alongside myself, wherever I am. Though it’s obviously had its challenges, I have treasured the years I’ve been given to spend learning about myself, caring for myself, and discovering the ways I can still be part of the community, even while in bed. I wouldn’t give this experience up for any number of adventures. The adventure I’ve found inside of myself is worth so much more.
Getty image by Ulza.