Even when I plan ahead, chronic illness makes it easy to push myself too far
Life with IgG4-RD gets heavy quickly, especially when you're carrying it alone
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I’m all moved out of my old home. But fully settled into the new one? Not even close.
Even with all the planning, the lists, the pacing, and the four full weeks I gave myself to move from one home to another, I still managed to overwhelm my body and mind to the point where I had to stop everything and take time for myself again. That’s the thing about living with IgG4-related disease or any other rare or chronic illness. You can prepare, adjust, anticipate, and cushion every step and still find yourself knocked sideways by the parts you can’t control.
With this move, I learned some valuable lessons and was reminded of others I thought I’d already mastered. People talk a lot about growth, but we don’t talk enough about how growth isn’t linear. We can know something, practice it, even build systems around it, and still forget it all when life gets loud and the load heavy. Change doesn’t happen overnight, nor do new routines and mindsets. What isn’t in our muscle memory doesn’t always show up when we need it most. So reminders matter. Practice matters. Repetition matters.
One reminder came quickly: Things can still go wrong, even when we prepare.
No one should have to carry the load alone
I had prebooked a moving truck for a specific time and location. I showed up exactly as scheduled, only to discover the truck had been left at a different site. It was a Sunday self‑pickup, so no one was answering phones or help lines. It was enough to throw off my entire day.
Another lesson came from asking my brother and cousins to help with the heavier loads. We had planned everything, but they had underestimated the difficulty and weight. I could see the pain on their faces, and they gently suggested hiring movers next time. They were right. In trying to save money, I put a physical burden on the people I love. For rare disease patients, hiring movers isn’t a luxury; it’s a smart, protective choice. If there ever is a next time, I’m hiring professionals from the start.
But the hardest part of the move was the final day: completing the move‑out inspection, returning the keys, and arriving at my family’s house already beyond exhausted. I walked into my bedroom and saw boxes and belongings scattered everywhere, pieces of my life in chaotic piles. My body was in major pain from the physical and emotional strain, and I collapsed into a meltdown and flare that lasted for days.
Every attempt to declutter felt like sorting through the debris of my own life while my nervous system was on fire.
Postural orthostatic tachycardia syndrome and autonomic dysfunction episodes can drain me in ways that are hard to explain. It feels like running a marathon I never signed up for. And with a wedding event and work travel coming up, I didn’t have the space to fully unravel and rest. My body paid the price.
In all my planning, I completely neglected the issues that worsen for me during a relapse, such as temperature dysregulation, cognitive fog, and organ‑specific dysfunction. It became a lot. It still is a lot. But I’m finally starting to feel like myself again, and so the roughest part is over for now.
There are moments when I wish someone could just take the reins for a while, so I can focus solely on my health without carrying so much weight on my shoulders. Nobody should have to carry this much weight, physically, emotionally, and mentally, and certainly not alone.
This move reminded me just how heavy life can get when you’re chronically ill and trying to hold everything together with two shaking hands. But it also reminded me why I fight so hard for patient support systems, because even though the load doesn’t disappear, it can be shared and lightened for the patient.
As I slowly find my footing again, I’m reminded that patients shouldn’t have to survive on grit alone. We deserve structures that catch us before we break, not after. Patient support shouldn’t be a privilege, but a given.
Note: IgG4-RD 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 IgG4-RD News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to IgG4-RD.
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