I thought I was building a solution for endometriosis
The more women I meet, the less certain I become that ENDOless is an endometriosis company.
Perhaps this sounds odd, considering that endometriosis is precisely where everything started. It is my story, after all.
Yet, after more than 250 user interviews and thousands of conversations, I cannot shake the feeling that we have collectively underestimated the scale of the problem. Different countries, different ages, different backgrounds, different lives; somehow, all conversations eventually lead to the same place.
I am no longer entirely convinced we are speaking solely about endometriosis. I suspect we are speaking about something much bigger. The irony is that these conversations almost always start identically.
I don't think I can help
I don't really have any symptoms.
My case isn't severe enough.
I have also started noticing a common thread. Women instinctively try to make themselves convenient. They minimise, they qualify, they apologise; almost as if asking for help required justification.
Ten minutes later, a paradox emerges.
Women tell me they have "no symptoms at all", they then proceed to describe years of cancelled plans, fainting from pain, persistent fatigue, brain fog, relationships under strain and entire lives organised around uncertainty.
What fascinates me is not the contradiction itself, but the fact that these experiences are no longer recognised as symptoms.
They have become normal.
They have become expected.
They have become life.
The second life created around a chronic condition
Perhaps the hardest part to articulate is that, over time, a chronic condition ceases to be a health issue alone and gradually becomes something around which life reorganises itself.
The shift is almost impossible to notice while it happens. It does not occur overnight, but through hundreds of small adjustments, compromises and calculations which, taken individually, seem insignificant yet, collectively, end up reshaping an entire life.
I also wonder whether we have been measuring the wrong thing all along.
Pain is easy to recognise. Everybody understands pain. Symptoms are important and, to some extent, we know how to document them.
Yet a chronic condition is far more than a collection of symptoms. It is the tremendous, and largely invisible cost of continuously managing them and, perhaps more importantly, integrating the possibility of them into everyday life.
Rarely do we stop and ask ourselves what a chronic condition truly costs.
Not because the answer is unknown, but because we have become remarkably good at measuring what is visible whilst overlooking everything else.
Pain is visible.
Symptoms are visible.
Consultations, prescriptions and surgeries are visible.
What remains largely invisible is the hidden workload generated by the condition itself: countless calculations, negotiations and adjustments that quietly accumulate until they begin to shape an entirely different way of living.
At some point, without even noticing it, a second life emerges.
A life that runs quietly alongside the visible one.
You still work.
You still travel.
You still make plans.
Yet every decision now carries an additional layer of complexity.
Every commitment is preceded by a calculation.
Every plan is accompanied by a contingency plan.
Every day begins with a negotiation:
Will I have enough energy?
Should I preserve myself today?
Can I afford to say yes?
Will my body cooperate?
The extraordinary thing is that, after a while, none of this feels extraordinary anymore.
The calculations become automatic.
The negotiations become reflexes.
The adjustments become personality traits.
Eventually, we stop recognising them as consequences of a condition at all.
Perhaps this is where we have collectively misplaced cause and effect.
We observe women functioning and conclude that they are well.
We observe women showing up and conclude that they are coping.
We observe women performing and conclude that they are resilient.
When, in reality, what we are observing is years of invisible work.
Perhaps the greatest burden of a chronic condition is not the condition itself, but the extraordinary amount of energy required to build an entire life around the possibility of it.
It simply becomes life.
Perhaps we have become too convenient
The more women I speak to, the more I notice another phenomenon.
Women do not naturally claim space.
They justify it.
They reassure me that their case is probably not severe enough, that others have it worse, that they are mostly fine.
I find this fascinating because, by the time they say these words, they have already described a life that has been profoundly shaped by their condition.
Perhaps years of adaptation have taught us to become convenient.
Convenient patients.
Convenient employees.
Convenient partners.
Convenient women.
Convenient enough not to complain too much, not to ask for too much and not to disrupt the lives of others.
I sometimes wonder whether this is another cost we have failed to measure.
Not only the burden of the condition itself, but the extraordinary amount of energy spent making sure that burden remains invisible to everyone else.
VivaTech reminded me of something important
Women have never been the barrier.
Women came to our booth to tell their stories. Some wanted to know more. Some simply wanted to say thank you. Some hugged me. Many asked me not to stop.
There is a recurring narrative suggesting that women are reluctant to share their data, that engaging them is difficult and that privacy and research cannot coexist.
I have yet to meet these women.
Not a single woman has ever told me: "No, please don't use my data."
Not once.
Some ask questions. Some want transparency. Some want to understand how their data will be protected.
Eventually, however, they almost always arrive at the same conclusion.
If this can help another woman, please use it.
Why I build ENDOless
My background in economics probably explains why I keep returning to the same thought.
There is a principle we learn very early on: ceteris paribus – all other things being equal.
The trouble is that things are almost never equal.
Not in economics.
Not in society.
Certainly not in women's health.
The more historical and medical literature I read, the more I wonder whether we have spent decades refining systems whose initial assumptions were flawed to begin with.
Perhaps we have not underestimated women's pain.
Perhaps we have underestimated women's ability to live around it.
And perhaps that is infinitely more dangerous.
Because the more invisible the burden becomes, the easier it is to convince ourselves that it no longer exists.
