The loop
I was driving with my son, navigating a traffic roundabout when I made the connection about how hard it can be to escape the loops, not just traffic roundabouts but also the negative mindset loop we get caught up in when living with a chronic illness. My son is a great sounding board for my metaphors. He’s used to me "talking in loops" thanks to my brain fog—patiently listening while I repeat myself, hoping the message resonates, or laughing as I find deep life lessons in the rules of the road. One of our favorites will always be “There will always be another turn.” In a traffic roundabout, there is nothing but turns. The trick is knowing how to merge over to take your exit, learning how to escape. Otherwise you will be caught up going around and around in an endless loop.
A chronic warrior knows this feeling. With each pain flare, new symptom or when we add a diagnosis we find ourselves back at the start of the loop. It’s a familiar walk through the stages of grief. It’s the denial of pretending a twinge didn't happen so I can keep going; the anger of feeling misunderstood; the bargaining where I try to negotiate a miracle; and the depression that feels like a quiet heartbreak of the soul. But then comes acceptance—the moment the pieces fall together and I can breathe again. The steps aren’t linear, you can skip steps and you can get stuck in stages even if you drove through them easily in the past. When I was driving with son, brainstorming my concept of the roundabout about being caught in the negative mindset I realized I wanted to create an info graphic to show people how to actually find the exits of the negativity loop.
Meanwhile, I had been trying to figure out how to publicly address my newest health concerns. For decades I have been talking about my health publicly. Using my story to help bring awareness and help our community. Then, about 2 years ago I began some new symptoms. Denial? Yes! Increased fatigue could be attributed to many things but the shortness of breath while taking my normal walk? The occasional heart palpitations even when sitting? The light headed, short of breath feeling where I need to steady myself? Because these moments were random, I was able to mask them from my husband and sons. I was already living with so much; I didn't want to add more to the pile. But eventually, I had to accept that this was out of my control. I tried to bargain my way out first. I dove into research, trying to "fix" myself. But when I ended up with more questions than solutions, the frustration set in. I realized I needed professional help.
Loops Upon Loops
The irony of the "loop" didn't stop at the roundabout.
Skipping many steps of my story…my Cardiologist (electrophysiology) found an arrhythmia and slightly faster than normal heart rate. He prescribed a medication to help the heart rate and we were going to be implanting a Loop Recorder to monitor the arrhythmia but … the insurance company at the last minute decided to say wait we need 3 weeks with a heart monitor study before we approve the Loop Recorder. Yes, another type of Loop! I already had did one week with the heart monitor, which is how my doctor discovered the arrhythmia and heart rate issue. Another common link all of us warriors share is the frustration with insurance companies overstepping into our health care.
Finding the Exit
This is why the roundabout is the perfect metaphor. We all want the easy escape, but there will always be obstacles—insurance, new symptoms, or simply each pain flare and overwhelm—blocking the exits. You might circle around a few times, testing different exits and repeating the process, but there is always another turn. The good news? The exit is always right there. Help is always within reach!
For me, I knew I’d reached "Acceptance" when I felt ready to talk about this publicly. Acceptance doesn’t mean I’m happy about this new diagnosis; it just means I accept it as a fact about my body. I’m done masking it to keep my loved ones from worrying. They will always worry because they love me so I shouldn’t control the image of what they see, knowing that the mask was more for my denial than taking care of them. Accepting this reality.
I don’t have all the answers yet, but I’m no longer trapped in the circle. I’m weaving in and out, using my tools to manage the ride. That’s what it means to be a Chronic Warrior.
I want to hear from you! What is the trigger that keeps sending you back to the loop and what tools do you find the most helpful in navigating your way out of the circle? What does acceptance look like for you? Do you still struggle with acceptance? I know many warriors do!
