Sharing what’s on your mind can ease loneliness in life with vasculitis
What do you want to talk about? Our community is listening.
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Some of the best things I’ve learned about living with ANCA vasculitis didn’t come from a journal article, a conference slide deck, or even a clinic visit. They came from you. From conversations. From comments. From private, patient-focused Facebook groups — messages that started with, “Does anyone else …” or “I’ve never told my doctor this, but …”
Those moments matter. A lot.
So today, I want to flip the script a bit and ask you directly: What do you care about right now? What’s on your mind? What would you like to see an article focused on? What questions are you carrying around that don’t always have a neat place to land?
Connecting with our community
One of the things I love most about this community is how much we learn from each other’s personal journeys. There’s something incredibly powerful about hearing someone else put words to an experience you thought you were alone in. Suddenly, that weird symptom, that fear, that frustration, or even that small win feels a little less isolating. You realize: Oh, it’s not just me.
Living with ANCA vasculitis can be lonely. Even when we’re surrounded by people who love us, it’s hard to explain what it feels like to live in a body that doesn’t always cooperate, to manage fatigue that can’t be “pushed through,” or to navigate medications and side effects that don’t show up in glossy pamphlets. Community doesn’t fix everything, but it helps. It reminds us we’re seen, heard, and understood.
That’s one reason disease-specific communities are so valuable, especially private patient Facebook groups. These spaces can be a lifeline. They’re where people share real-world experiences — what helped, what didn’t, what surprised them, and what they wish they’d known sooner. They’re also places where you can ask the questions you might feel awkward asking elsewhere, or admit you’re scared, tired, or just over it today.
If you’re newer to vasculitis and wondering how to find these groups, here are a few tips:
- Search Facebook using terms like “ANCA vasculitis,” “EGPA,” “GPA,” or “MPA private group.”
- Look for private or closed groups that are disease-specific and moderated.
- It’s OK to just read and get a feel for the space before jumping in. That said, from my experience, these communities are well administered and quite safe.
These groups aren’t perfect, and they’re not a replacement for medical care, but they are incredibly valuable. They’re places where our experience lives. Where patterns emerge. Where we learn how others advocate for themselves, communicate with doctors, handle flares, or find joy in the middle of uncertainty.
And that brings me back to why I’m writing today.
This column, “Truth Be Told,” is meant to reflect the things that actually matter to you. Not just the clinical stuff, but the human stuff. The everyday realities. The questions we whisper to ourselves at 2 a.m. The lessons we learn the hard way. The things that make us feel alone until someone else says, “Me, too.”
So tell me, what should we talk about? Is it fatigue? Fear of flares? Navigating work or relationships? Side effects no one warned you about? Trusting your instincts? Finding good care? Holding on to hope? Something else entirely?
I genuinely want to know your thoughts, because we are in this together. Your experiences help shape these conversations, and they help all of us feel a little more connected along the way.
Truth be told, your voice matters. And I’m listening.
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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