Grieving the loss of retirement after going out on disability

Sometimes the hardest losses with ANCA-associated vasculitis aren’t the ones anyone can see.

Recently, my brother-in-law finished his last day of work. He’s stepping into retirement, a milestone marked by celebration, reflection, and the promise of something new. I am genuinely happy for him. But alongside that happiness sits something quieter: grief. Because his moment reminds me of something my wife and I lost.

Before my diagnosis in 2021, I had a vision — not a detailed one, but a steady expectation. I assumed I would work for a long time. Retirement, in my mind, wasn’t about stopping. It was about choosing to keep contributing, especially to nonprofit work, because I believed in giving back. It was freedom, not limitation.

ANCA vasculitis changed that entirely.

Recommended Reading

Sept. 13, 2024 Columns by Suzanne DePaolis

How I’ve been able to fulfill my dreams, even with ANCA vasculitis

Unlike other health issues I had faced, this wasn’t something I could treat and move past. This was a permanent shift. A lifelong recalibration of what “normal” looks like. It required — and still requires — constant adjustment because the disease itself is unpredictable.

Within months of my diagnosis, I made the difficult decision to leave my job and apply for disability. It was the right decision. But that doesn’t mean it was an easy one.

There’s no celebration for becoming disabled. No retirement party. No congratulations. No shared cultural script for what comes next.

Now, when I sit in a doctor’s office filling out forms and see the question, “Do you work full time, part time, are you retired, or unemployed?” I’m reminded that none of those boxes fit. I didn’t retire. I didn’t choose to stop working. I didn’t transition into a new phase.

I was forced out of a life I had planned.

Grieving the loss — then building something new

That realization carries a particular kind of grief — not just for the career I left behind, but for the future my wife and I assumed we would have. We never planned to have children, so that wasn’t part of our vision. My wife and I grew up in a time when we didn’t even know whether we would be able to legally marry. The fact that we are now married is something we don’t take for granted but celebrate deeply. We did, however, imagine a life in which we had time, choice, and agency over how we spent our later years together.

We never imagined we might not get there in the way we expected.

The loss of retirement — or at least the version we imagined — is not something people often talk about. But it matters. It’s part of the broader identity shift that comes with diseases like ANCA vasculitis. Work is more than income. It’s structure, purpose, community, and for many of us, a way of contributing to something larger than ourselves.

Losing that, especially without choice, changes how you see yourself. But the story doesn’t end in loss.

As I reflect on this, I also realize something else: In many ways, my wife and I are already having the retirement conversation. Not the one society defines, but one shaped by necessity and awareness. With a chronic illness, you don’t wait for someday. You can’t rely on long timelines or predictable phases.

You learn — sometimes slowly, sometimes all at once — to live differently. To pay attention to the good days. To make decisions based on what matters now, not what might be possible decades from now. To redefine what fulfillment looks like.

It’s not the life we planned. It’s an altered experience, and it comes with grief, but once you clear the tears from your eyes, it can also come with a sharpened sense of what is still possible.

For patients and care partners, this is one of the quieter truths: Chronic illness doesn’t just affect your health; it reshapes your timeline, your expectations, and your shared future. Acknowledging that loss doesn’t mean giving up. It means making space for honesty. And from that honesty, you can build something new — not the life you expected, but one that still holds meaning, connection, and moments worth celebrating.

Note: ANCA Vasculitis 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 ANCA Vasculitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ANCA vasculitis.