Kia ora, friend. My name is Mary. I’m a writer and photographer living in sunny Central Otago.
In 2017, I was first diagnosed with MAC lung disease – a form of NTM, or Non-tuberculous Mycobacterial disease. I remember sitting with that diagnosis and feeling utterly alone. Hardly anyone seemed to know what NTM was. When I turned to Google, I found scientific papers, survival statistics, and worst-case scenarios. What I didn’t find was something simple and human:
What does this actually feel like?
What might I expect?
How do you live well with this?
There was very little written from the patient perspective. This blog is my attempt to change that – in a small way.
Here, I’ll share my own lived experience as an NTM patient. I’ll talk about treatment, side effects, uncertainty, victories, setbacks, and the quiet resilience this illness asks of us. I’ll also share insights, stories and hard-won wisdom from other patients who are walking this road.
This is NOT medical advice. It’s not a substitute for your specialist or respiratory team. It’s simply one patient speaking honestly to another.
If you’re newly diagnosed and feeling overwhelmed, I see you.
If you’ve been living with this for years and are tired of explaining it, I see you too.
You are not alone.
I warmly invite you to connect with our New Zealand NTM patient peer support community. There is something powerful about speaking with others who truly understand – without having to give long explanations, without the blank looks. If you’d like to join us, or simply share your story, please reach out. We’d love to hear from you.
We’re in this together. Now, let’s talk about what this journey is really like.
One step at a time.
Arohanui
Mary
