Once a month, we meet together on Zoom. Sometimes there’s a guest speaker, sometimes it’s just us.
Sometimes my camera is on and I’m sitting at my desk with a cuppa. Sometimes I’m secretly still in PJs, tired after a rough day.
Sometimes I talk a lot. Sometimes I don’t speak at all. Sometimes I come for the whole session. Sometimes I’m there for part of it.
And all of that is OK.
The point of it all isn’t performance – it’s presence and connection.
“Don’t join those forums – they’re so negative!”
One patient confided in me that her specialist had warned her against joining online support groups. “They’re just negative,” she was told.
I understand that view. When you live with an illness, you don’t want to be dragged down.
But here’s what I’ve seen.
This is not a place where people compete over who is the sickest, or who is having the worst experience. It’s a place where someone can say, “It’s been a tough week…” and no one tries to fix them or silence them.
We listen. Because we’ve been there.
Letting someone say the hard stuff out loud isn’t negativity. It’s relief.
But mostly, we just talk. We listen. We laugh. We swap tips. We hear about the latest conference, or drug trials. We compare notes about airway clearance, medications, side effects, doctors, travel plans, food, children …
Mostly, we learn from each other.
But what if you don’t ‘do’ Zoom?
Not everyone is comfortable online. And that’s OK too.
If you’ve never used Zoom before, could a family member or trusted friend do it for you on their phone or computer? Could they help you set it up on your phone or device and log in? And if you let Sue, our peer support coordinator, know, she is always happy to do a test run.
If you’re anywhere near to me, and would like to join but feel unsure, I’m always happy to share my screen.
So, here’s the challenge for those of us who are comfortable online:
Is there someone you know with bronchiectasis or NTM, or both, who isn’t joining in? Could you offer to sit with them for a session?
Because the truth is, the people who aren’t online probably aren’t reading this blog post.
Which means it’s up to us.
Bronchiectasis and NTM are closely linked. Many of us live with both. They can be complex, exhausting, sometimes a little frightening.
But when we meet each month, something shifts.
Meeting with other patients helps me remember I’m not the only one navigating sputum samples, side effects, scan results, fatigue, and uncertainty.
We’re a community.
And whether I arrive polished or in pyjamas, speaking or silent, for 5 minutes or the full hour – I belong.
If you’d like to join our monthly get-togethers online, please do. Contact Sue via our Contact page on this website NewZealand@ntminfo.org – she will welcome you and send you a link.
One step at a time.
Arohanui
Mary
