7 things i started doing between doctor visits to take my power back
Some of the hardest words I heard in the doctor's office weren't "We don't know what's wrong," or even "There's nothing more we can do."
They were: "We'll see you again in three to six months."
And like so many others living with chronic illness or pain, I found myself wondering:
"Okay...but what am I supposed to do until then?"
At a time when I often didn't know how I was going to get through the next five minutes, I was somehow expected to figure out how to navigate the next several months on my own.
I remember leaving appointments with a mixture of fear and uncertainty, realizing that while my doctors played an important role in my care, there were parts of my life they simply couldn't manage for me.
They couldn't help me through the long weeks between appointments.
They couldn't make the decisions I still had to make every day.
They couldn't navigate my symptoms for me or tell me how to get through the waiting.
And there were plenty of things beyond my control as well.
I couldn't control whether I'd return to work.
I couldn't control the labyrinth of the healthcare system.
I couldn't control whether the next treatment would help.
So I decided to begin looking for the places where I still had some say.
In hindsight, none of these things happened overnight. Most of them emerged slowly through trial and error, one small adjustment at a time. Little by little, they helped me feel less helpless and more actively involved in my own life.
1. I started paying attention to the language I was using.
I started noticing the language I was using most often to describe myself. Over time, I began choosing words that felt more affirming and empowering instead of reinforcing what I'd lost.
For example, rather than saying, "I'm a chronic pain sufferer," which made me feel like a passive recipient of my circumstances, I began saying, "I live alongside chronic pain." To me, the latter puts me back in the driver's seat, with pain as the companion rather than the one calling all the shots.
I also began paying attention to the way I spoke to myself throughout the day. Instead of saying, "I can't even do X anymore," I started celebrating what I could still do, even if it was something as simple as brushing my teeth or making myself lunch. A gentle, "Well done!" became far more helpful than another reminder of everything I felt unable to do.
Those small shifts in language didn't change my pain, but they gradually changed the way I saw myself. And that changed far more than I expected.
2. I redefined what "reasonable expectations" meant.
I've always been what you might call a Type-A overachiever — a high-functioning perfectionist and relentless multitasker. Once chronic pain entered the scene, my body and I needed a long-overdue conversation about those tendencies.
It became clear that I had to rethink what productivity meant and stop measuring my worth by how much I could accomplish in a day.
Over time, I learned to begin each day with a clean slate, focusing on one task at a time. I also started appreciating progress in smaller increments, finding satisfaction in those micro-steps instead of expecting myself to start and finish everything in one go.
Perhaps most importantly, I learned to pace both my time and my energy, something I had never really allowed myself to do before. If I have something scheduled that requires effort, stamina, or planning, that's what I budget my energy for. Anything else I accomplish beyond that is a bonus, not a requirement.
It's taken time to unlearn my former definitions of what "reasonable" means, but adjusting my expectations has been one of the most freeing changes I've made.
3. I stopped relying on the system to keep my medical records organized.
Many of us have experienced the frustration of hunting for medical records somewhere in the maze of the healthcare system. Like many people, I assumed everything would be organized behind the scenes — that records would be communicated accurately and readily available whenever I needed them.
After one too many mishaps, I began keeping my own complete set of records at home.
I soon realized this was more than simply staying organized — it was a form of self-advocacy. Having my imaging reports (and CDs), medication lists, provider notes, patient advocate forms, and other important documents in one place kept me an active participant in my own care instead of relying solely on the system to keep track of my story.
Even with access to an online patient portal, I've found it invaluable to have hard copies available when questions arise or information needs to be shared quickly. It proved especially helpful during medical leave and the disability process, when I often needed to provide documentation to multiple parties.
I also started keeping a running list of questions before appointments so I wouldn't forget what mattered most once I was sitting in the exam room.
Creating this system wasn't something I wanted to spend my time or energy doing. But once it was in place, maintaining it became easy, and it's saved me immeasurable time, frustration, and confusion over the years.
4. I made my home work for me instead of against me.
I've always kept a tidy home that worked in conjunction with my daily life and routines. While I still appreciate keeping things orderly, I've gradually made changes to better suit the life I live now.
Aside from the usual decluttering, I've placed frequently used items within easy reach to avoid unnecessary bending, reaching, and strain. I've simplified my rooms so they're easier to navigate and maintain. I've streamlined daily tasks by batch cooking and freezing meals, having groceries delivered when needed, and paying bills online. Little by little, I replaced uncomfortable chairs and eventually even my bed with pieces that were more supportive and easier to use. Eventually, my home became more functional and better aligned with my everyday needs.
Making these changes gave me a much-needed boost in confidence. Every small adjustment that reduced frustration became another opportunity to say, "I can do this." Instead of my home constantly reminding me of what had become difficult, it began supporting the life I was trying to build.
5. I created a greater sense of sanctuary.
Like many people living with chronic pain or illness, I spend a great deal of time at home. Rather than feeling trapped by that reality, I decided I wanted my home to become a place I genuinely loved being in.
Beyond making practical improvements, I felt a growing need to create a true sense of sanctuary. It wasn't about spending money or following decorating trends. It was about intentionally creating small reminders of comfort and beauty using the things I already had.
A vase of flowers on the table.
A favorite object on the nightstand.
A soft throw blanket in a color I love.
Something colorful that catches my eye in the sunlight.
Gentle music playing in the background.
A bed that feels inviting at the end of the day.
These things may seem small on their own, but together they create an environment that supports healing, rest, and ease.
Today, my home is a place I'm genuinely grateful to spend time in. It holds the story of my life in every room, on every wall, and every object it contains. Everywhere I look, there's something beautiful I've chosen to place there. Everything I've done to make it a sanctuary has been a gift I've given myself.
6. I prepared for flares before they happened.
Anyone living with chronic pain knows how quickly a flare can knock the wind out of you. When pain suddenly intensifies, even the simplest decisions can feel overwhelming.
It didn't take long for me to realize I needed to prepare for those days before they arrived.
One of the first things I put together was what I now call my flare basket. I asked myself a simple question:
What helps me most when pain spikes?
From there, I gathered the things I reached for most often: ice packs ready in the freezer, a heating pad, a cozy blanket, a sketchbook and colored pencils, gentle music, and a list of favorite shows that didn't require much concentration.
I also began keeping easy-to-grab foods in the refrigerator, comfortable clothes within reach, teas I enjoy, and other small comforts that made difficult days feel just a little more manageable.
Now, when a flare arrives, I don't have to spend precious energy figuring out what I need. I've already made those decisions on a better day. It reminds me, "I can get through this."
7. I learned to protect my peace.
Protecting my peace began out of necessity, but over time it became one of the guiding principles of my life.
Once chronic pain entered the picture, it became clear that my energy was no longer unlimited. Every unnecessary source of stress demanded something from me that I could no longer afford to give away so freely.
I had already begun creating a more peaceful environment in my home. Eventually, I realized I needed to do the same with the rest of my life.
That meant speaking my truth, even when it felt uncomfortable. Saying no without feeling obligated to justify it. Setting healthier boundaries with people who weren't respecting my time, energy, or well-being. It also meant becoming more intentional about what I allowed into my mind. I became selective about the media I consumed, choosing things that left me feeling calmer rather than more anxious or overwhelmed.
Little by little, I stopped asking whether I should spend my time or energy on something and started asking whether it genuinely supported the life I was trying to create for myself.
Protecting my peace isn't about avoiding life. It's about recognizing that where we place our attention matters, especially when we're already carrying more than enough.
None of these things cured my pain, and none of them replaced good medical care.
What they did was remind me that while I couldn't always choose what was happening to me, I could still choose how I responded to many parts of it.
That didn't solve everything. But it helped me stop feeling like I was spending three to six months simply waiting for someone else to tell me what came next.
I think that's really what I was searching for all along -- a way to keep living my life while I waited.
And in doing so, I slowly reclaimed something chronic pain had convinced me I'd lost: the belief that I still had a meaningful say in my own life.
With you on the journey,
Julie 🍃