Life is full of surprises, especially when living with chronic illness. Just as unexpected events occur when living remotely, our health can present unforeseen challenges. But within these challenges lies the opportunity to build resilience. This article explores how embracing mistakes, preparing for the unexpected, and fostering community can pave the way for a more resilient life with chronic conditions.
From practical preparations to mental fortitude, we will cover essential strategies for managing health flares and finding peace amidst uncertainty. Learn how to create backup plans, document critical information, and connect with supportive communities to enhance your resilience toolkit.
Two Ways to Get Everything Necessary
When our well pump froze in the short time our generator required resetting, I learned a valuable lesson. We needed two ways to have water. Now, we collect a hundred gallons of rain water by our front door and back door and have water treatment and extra filters on hand. A crisis will still be an inconvenience, but it will not be a sanitation or survival emergency.
After a recent ice storm, we were unable to get down our driveway or out the steep neighborhood roads for five days. Thankfully, we had shelved several weeks’ worth of pasta, rice, frozen meats and veggies over months of grocery shopping. While some newer neighbors wrecked cars trying to get to the grocery store, we were camping out inside our house.
In chronic illness life, this may look like asking the pharmacist for a few emergency doses of medication, stashing critical items for care in multiple places just in case. Maybe preparation really does mean storing water or snacks. Maybe it means buying a cane before it’s needed or stocking up on wraps for tricky joints. Having two ways to get essential needs met increases peace of mind and may also help save valuable energy.
Mental Lists Are Hard to Access In Emergencies
If there is a list or a process that only I or my partner know, then the rest of my family could be disadvantaged if something happens to us or if we aren’t thinking as clearly in an urgent situation. We started writing down information about various systems around the house and land. Ideally, we have a copy in one central location and also easily found near that system itself. Manuals are stored near each appliance instead of relying on a file system that someone else may not know to look for.
Being a half hour from the nearest hospital makes our medical information crucial. I try to keep medication lists and current providers for each of us up-to-date. Because of my rare conditions, I have a typed sheet slipped in plastic cover that I got my primary physician to help create to be sure ER physicians had accurate information and quick medical history as well as treatments that work and don’t work. I’ve found even when I can explain, this sheet elicits much more focused care.
Community Can Make The Difference
When our generator was out, we called a neighbor who told us how to reset it. When a bear was visiting our front porch and causing damage, other neighbors knew who to call from dealing with similar situations. And of course, we discovered that most of the men in trucks drive with chainsaws after living here awhile.
Geographic and relational connections can make all the difference. Once when I was walking our trail, I heard someone calling for help. It was the neighbor across the creek who had accidentally gotten locked inside her greenhouse. She didn’t have a phone. Literally only her voice and someone being outside at that moment saved her from having to break glass. After that experience, I made it my mission to know the names and visit or call each adjoining neighbor every few months just to say hello. I want them to respond if I’m calling for help and be able to do the same for them.
Community might look different for those with chronic illness. Physical neighbors might be more valuable in a medical or physical emergency. But having relationships with people in similar situations is also vital. This might require joining and participating in a relevant support group online or locally. Doctors often know about condition-specific resources. There may be a research group where connections can be made. I’ve been delighted by meaningful conversation in TikTok comment threads and well-mediated Facebook groups.
Finding those ahead of me and next to me on my journey helps me to be a better help to those behind me. Wherever I go now, I look for the people leaning against a wall or sitting more than others. I look for the people rolling their shoulders or rubbing their temples. Of course, illness is so often invisible, so I stay mindful that others may be hiding just as much as I sometimes hide.
Living with chronic illness requires resilience, much like living in a remote environment demands preparation and independence. The surprises are not always beautiful, but they offer opportunities for growth and perspective. Preparation, shared information, and community are necessary for navigating the uncertainties and flares of chronic illness.
These tools also help cultivate peace and appreciate the unique perspectives illness brings. By embracing these strategies, we can become individuals with the capacity to remove barriers for ourselves and others affected by chronic conditions. Remember to lift your eyes and linger in moments of calm and wonder, finding strength in the journey.