About Painfully Invisible
Hi, I’m Camilla Viecelli.
I’m Brazilian, living in the Netherlands, and I’m the person behind Painfully Invisible.
For most of my adult life, work was a huge part of who I was. I spent around 17 years working in tech — across project delivery, Agile, data, and, most recently, AI strategy.
I was independent, ambitious, busy, constantly doing something, and particularly bad at sitting still.
Then my body started making other plans.
I didn’t plan on making a project about chronic illness.
To be fair, I didn’t plan on becoming chronically ill either.
When illness stops being something happening in the background.
I live with severe stage IV deep infiltrating endometriosis — a chronic disease that, over time, became increasingly difficult to fit around the rest of my life.
Eventually, there was no fitting around it.
Work stopped. Plans changed. My calendar filled with medical appointments. Pain management became part of the daily routine. And things I had barely thought about before — energy, walking somewhere, sitting through dinner, making plans for next week — suddenly required calculations.
There is a strange amount of admin involved in having a body that doesn’t cooperate.
But one of the hardest things to explain is how enormous an illness can become while remaining almost completely invisible to everyone else.
From the outside, sometimes I look perfectly fine.
That’s kind of the problem.
So I started recording.
At some point, while trying to understand what my life looked like now, I realised I wanted to document it.
Not once everything was better.
Not retrospectively, with a neat beginning, middle and inspirational ending.
While it was happening.
The appointments. The treatments. The pain. The waiting rooms. The conversations with doctors. The conversations after the doctors leave. The days when I can do things. The days when getting out of bed is the thing.
And all the completely ordinary life that continues happening around it.
That became the beginning of Painfully Invisible.
This isn’t just my story.
The more I experienced chronic illness and the healthcare system myself, the more questions I had.
Not only about endometriosis, but about what chronic disease does to a person’s life.
What happens to your identity when your body changes what you’re capable of doing?
What happens to careers? Relationships? Sex? Independence? Mental health? Money? Ambition? The way you imagine your future?
And why are so many of those conversations still happening quietly — between patients, partners and friends — rather than being part of how we talk about illness?
So I started talking to people.
Patients, doctors, psychologists, researchers, partners, caregivers and others whose lives or work intersect with chronic disease.
Not really interviews.
Conversations.
Because I have questions for them, but they can have questions for me too.
The podcast. The documentary. And whatever this becomes.
Painfully Invisible is growing into a podcast and an independent documentary project.
The podcast creates space for longer, honest conversations about chronic illness from different sides of the room — including the people living it and the people trying to understand, research and treat it.
The documentary follows my own experience as it unfolds.
Not just hospitals, appointments and treatments, but everything around them: home, relationships, work, identity, good days, terrible days and the strange little moments that somehow become normal.
And this website is where all of those pieces can live together.
I’m not a doctor, and Painfully Invisible isn’t here to tell anyone how to be sick.
I’m a person living through this, documenting what I see and asking a lot of questions along the way.
No inspirational ending required.
I don’t know how this story ends yet.
That’s intentional.
Chronic illness doesn’t always give you a satisfying before-and-after.
Sometimes there is just before and now — and the ongoing work of figuring out what a life can look like from here.
I don’t want to turn illness into a story about being brave, strong or inspirational.
Sometimes I’m strong.
Sometimes I’m angry.
Sometimes I make jokes about it.
Sometimes I don’t want to talk about it at all.
That’s part of the story too.
Painfully Invisible is about making some of what usually goes unseen visible.
The physical reality of illness, but also everything it touches around it.
And if somewhere along the way another person recognises themselves in any of this and feels a little less alone, that’s more than enough reason to keep recording.
Welcome to Painfully Invisible.