Sharing with others about vasculitis can strengthen connections

Holidays can be wonderful — full of joy, connection, and tradition. They can also be complicated, especially for those of us living with vasculitis. This season, I was reminded of the importance of sharing openly with the people we love about what this disease means in our day-to-day lives. Not to dramatize things, but to give the people around us the information they need to understand our choices.

When we hold back, friends and family are left guessing: Why did we leave early? Why did we cancel plans? Why do we ask — every single time — if anyone in the group is feeling sick? Transparency can ease that confusion and prevent people from taking things personally.

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Recently, after my wife, Pam, and I moved back to Michigan to be closer to family, I realized that many of the people around us were “new” to vasculitis. So when we left Thanksgiving a bit abruptly because one of the kids was sick, it may have felt confusing. I decided to explain in the most honest and direct way I could. Here’s an excerpt from the note I sent:

I know I haven’t shared much about my disease, especially when we were 2,000 miles away. Now that we’re close, I want you to understand a little more so you know why I/we can be unpredictable and why there is so much caution with groups.

I have EGPA [eosinophilic granulomatosis with polyangiitis], a rare form of vasculitis — about 2 in a million. It’s invisible, but it affects every small and medium blood vessel and the organs attached to them: lungs, heart, nerves, gastrointestinal system, kidneys, and more. I may look OK, but I feel this disease every single hour — always.

There’s no cure, and without treatment it slowly destroys organs. The only way to control it is to shut down my immune system, which means I’m on 26 medications — some for the disease, others for the side effects. Because my immunity is suppressed, even a simple virus can become dangerous for me. That’s why crowds and sick environments are risky, and why we sometimes leave gatherings suddenly. It’s never personal; it’s just what we have to do to stay safe.

The disease also causes profound fatigue — so deep that sometimes even chewing takes energy I don’t have. We plan the best we can, but we never know what any day (or hour) will bring.

And there’s another piece: One of my medications caused significant hippocampal atrophy — my “mini-hippo.” It makes it harder to process new environments, follow conversations, or track details. It’s invisible, but it complicates everything.

Through all of this, Pam is my hero — the love of my life, my steady brain, my protector. She lives this disease by proxy.

I’m sharing this because I love you, and I want you to understand — not for sympathy, but so you know our hearts and intentions. We are thrilled to be close to you and grateful for every moment we share.

Sharing is vulnerable, but also kind. It gives the people we love the information they need to support us, and it helps us feel more understood.

If you live with vasculitis and haven’t shared much with your family or close friends, you might consider opening that door. It doesn’t have to be dramatic or heavy, just honest. Sometimes a simple explanation can transform confusion into compassion and help everyone feel more connected, especially during a season that already carries enough pressure.

Being open about our reality isn’t just helpful to others; it can also make our own lives easier. And with a disease that affects every corner of our energy, choices, and planning, anything that creates smoother, kinder connections is worth considering.

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.