A seasonal reminder to thank the loved ones who walk beside us
They shoulder the burdens of worry, helplessness, and responsibility every day
As we move through this season of gratitude — along with the stress, pressure, and emotional noise that often comes with the holidays — I find myself reflecting on the people who help us navigate this unpredictable, exhausting, and frequently overwhelming disease that is ANCA-associated vasculitis.
Living with ANCA-associated vasculitis can feel like waking up each day inside a body with its own secret agenda. It affects our confidence, energy, focus, plans, and sometimes our relationships. It can consume our bodies and minds in ways that we rarely express out loud. Because of that, it’s easy to forget something important: We aren’t the only ones living with this disease.
The people who love us — our partners, spouses, family members, and friends — live with vasculitis, too, just in a different way. They might not feel the joint pain, the fatigue that stops us in our tracks, or the fear of a flare that appears out of nowhere. However, they do experience other emotions, such as worry, helplessness, and a sense of responsibility, whether they acknowledge them or not. And they carry these things every day.
Just as our loved ones can never fully understand what it feels like to inhabit our bodies, we can never entirely comprehend the emotional and physical toll this journey has on them. And it does take a significant toll.
I don’t say this to make anyone feel like a burden, although I know what that feels like and suspect you do, too. I don’t mean to stir up guilt, although it does sneak in. Instead, I offer a gentle reminder: Take a moment to say thank you.
You can say it imperfectly, awkwardly, in a text, a note, or even a messy paragraph. But do say it.
If you’re a care partner reading this, please hear this clearly: You are special, and you are loved. Your health matters, too, along with your rest and emotional well-being. You deserve support and space to breathe, too. The burden you carry — quietly, steadily, and often invisibly — is real, and you shouldn’t have to go it alone. Finding someone to talk to can make a difference, whether it’s a friend, family member, therapist, or support group. You are on this journey along with us, even though you never asked for it.
An important message, no matter the format
I recently attended Thanksgiving with my wife’s family for the first time, where 28 people gathered in a single home. For someone with ANCA-associated vasculitis and the immune system concerns that go along with it, being in a crowd can feel like running an obstacle course: Who is coughing or sniffling? Where are the tissues? How close is too close? Is it a bad idea to leave my food sitting uncovered on a plate? Should I put on my mask?Â
My wife was right there through it all — steady, calm, and protective in a way that helps my nervous system stay grounded. We navigated the germ storm together. And today, I felt obligated to write her a thank-you note. It wasn’t planned or polished, just something that was in my mind, heart, and soul. I sat down and wrote freely, messily, emotionally, and honestly.
If you’re a skilled writer and don’t need any help, wonderful. If not, or if you struggle with brain fog, fatigue, energy limits, or the simple mental overload that comes with this disease, artificial intelligence (AI) tools like ChatGPT can be helpful. You can ask AI to check spelling and grammar, help you shape your thoughts, or turn your messy notes into something clearer. It’s not about perfection; it’s about expression and letting the people who care for you know what they mean to you.
However you decide to share your gratitude, whether it’s with words, a message, a voice note, a hug, a drawing, or a small gesture, I encourage you to take a moment to do it. Our loved ones navigate a complex, unpredictable world because they care about us. They steady us, support us, and sometimes hold us up when we can’t hold ourselves up.
This season, let’s recognize them. Let’s honor what they endure. And let’s remind them that we see them, and their love helps us navigate this unruly disease every single day.
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.
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