What moving back to my family home has taught me about independence

Moving is never just about boxes. When you live with a chronic illness like IgG4-related disease, moving becomes a full‑body experience: physical, emotional, logistical, and deeply personal. I’ve moved more times than I can count: across four countries growing up, across cities while at university, and then again when I built a home with my now ex‑husband. Relocation has been a familiar rhythm in my life. But this move feels different. It’s the first time I’m moving while chronically ill and physically weak, and I’m doing it entirely on my own.

I’m packing up the life of a married couple, but I’m doing it solo. Every object I pick up carries a memory, a version of myself, a moment from a life that no longer exists. And because my parents’ home is already full, I’m donating, selling, or letting go of almost everything I own. It’s a strange kind of shedding: practical, emotional, and necessary.

To protect my health, I gave myself six weeks to move. I wish I had allowed myself this kind of time in the past, as it would have saved me from several high‑stakes health crashes. But this time, I planned ahead. I told the management at my current residence what was happening, and with my primary care doctor’s help, I was able to break my lease early without the usual fees. That single act of honesty saved me $3,200 and probably a severe relapse.

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I want to pause here, because this part matters: Please don’t be afraid to use your medical reality when you need support.

There are systems, exceptions, and accommodations built for situations like ours, but they only work when we’re willing to be honest and vulnerable. The worst that can happen is someone says no, and then you’re simply back where you started. Nothing was lost, but you at least opened the door to a possible gain.

An opportunity to rebuild myself

Letting go of belongings has been harder than I expected. There’s the emotional weight of releasing pieces of a life I built, and then the physical work of sorting, packing, lifting, and transporting. But giving myself six weeks has made it manageable. Every couple of days, I pack a box or two, drive them to my parents’ house, and slowly set up my new space, piece by piece, box by box.

And somewhere in that repetition, I realized something: Piece by piece, I’m rebuilding myself, too.

What’s been harder is the emotional shift. I’ve lived independently for years, with my own routines, my own silence, my own space. Moving back into my family home means less privacy, less isolation, and more shared energy. It’s an adjustment — one I didn’t fully anticipate.

But there are gifts here, too. Not paying for full rent or utilities. Having help with daily chores I can no longer manage alone. The financial freedom to travel for work and for joy. Fewer bills. More access to functional and Eastern medicine. And, most importantly, the caregiving support I need while I’m in a relapse and preparing for a clinical trial that comes with uncertainty and risk.

It’s easy to frame this move as a loss of independence. I’ve had to remind myself (sometimes daily) that the truth is more complicated. I’m not losing my independence because I’m moving home.

I lost it slowly, quietly, through a healthcare system that demands more than my body can give, and an economic system that punishes illness with financial instability. This move isn’t a step backward. It’s a recalibration. A rebuilding. A strategic pause so I can regain the independence that actually matters.

To my fellow rare birdies across the world: If you feel like you’ve lost pieces of yourself along the way, you can rebuild, too. Be open. Be honest. Be vulnerable. Ask for help from people, from systems, from the alternative routes that exist for people like us. There is more care, support, and acceptance available than we’re taught to believe.

Sometimes we have to let go of the old — the belongings, the expectations, the previous versions of ourselves — to make space for the new. This is not the end of my independence, but rather the beginning of finding it again.

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.