Petition Update: We Cannot Demand Better Care While Turning on Each Other
The endometriosis crisis in Ireland has caused enormous individual and collective pain.
Years of delayed diagnoses, inadequate treatment, medical gaslighting, fertility loss, financial pressure and fighting to access appropriate specialist care have left many patients exhausted, traumatised and angry.
But I believe we also need to have an uncomfortable conversation about what that pain is doing within our own endometriosis community.
The very spaces that should feel safe for patients are increasingly experiencing internal conflict.
Patients are falling out with other patients.
Advocates are clashing with other advocates.
There can be a sense that everyone is fighting for the microphone, while women’s individual stories risk becoming overshadowed by conversations about who has been advocating the longest, who has the largest platform, who has the most influence or who should be considered the most established voice.
There should be no hierarchy of suffering and no hierarchy of advocacy.
A woman diagnosed yesterday has as much right to tell her story as someone who has campaigned for twenty years.
Someone with ten followers deserves to be heard just as much as somebody with ten thousand.
And no single advocate, organisation, campaign or platform owns the endometriosis conversation in Ireland.
The anger patients feel about what has happened to them is understandable. But when that unresolved pain becomes projected onto other patients, we risk reproducing harm inside the very community that should be supporting us.
I have experienced some of that conflict personally, and I have written openly about communication, blocking, online behaviour, bullying, boundaries and accountability in my latest Substack:
The Block Button: When Did We Stop Talking to Each Other?
This is bigger than any individual disagreement.
The endometriosis crisis was not created by patients.
Patients are not the enemy.
The women sitting beside us in waiting rooms are not the enemy.
Another advocate receiving media coverage does not take away from our own story.
Another patient establishing a campaign does not invalidate existing work.
Another woman being given a microphone does not mean somebody else has lost theirs.
We can disagree. We can have different approaches. We can establish boundaries. We can challenge each other when necessary.
But we also need to communicate.
Because if we genuinely want successful, lasting change in endometriosis care in Ireland, we need to find ways to unite around the things that matter most.
Earlier diagnosis.
Specialist multidisciplinary care.
Appropriate surgery.
Fertility protection.
Equitable access regardless of geography or income.
Accountability when care fails.
And a healthcare system where the next generation does not have to fight as hard as this generation has had to fight.
That is what this petition has always been about.
Our individual stories matter enormously, but the movement has to be bigger than any one of us.
There is enough room for every patient to speak.
There is enough room for multiple advocates.
There is enough room for different campaigns, organisations and approaches.
We don’t need to compete over who gets the microphone. We need to make sure the microphone is loud enough that those responsible for changing endometriosis care can no longer ignore us.
If we want safer healthcare spaces for patients, we should also be working towards safer community spaces for one another.
We will not agree on everything.
We don’t have to.
But surely we can agree on this:
The endometriosis crisis has already taken enough from patients. We cannot allow it to take our ability to stand together too.
So please, keep signing the petition. Keep sharing the petition. Keep sharing the posts. Keep talking about what is happening to endometriosis patients in Ireland.
Every signature matters.
Every share helps another person’s story reach beyond our own community.
Every conversation keeps pressure on those with the power and responsibility to create meaningful change.
This was never about one patient, one advocate or one voice. It is about all of us and lasting change will require all of us.