Why We're Broadening Our Advocacy

One of the things that has become increasingly clear through our work in the MRKH community is that, whilst our diagnoses may be different, many of our experiences are not.

When people think about conditions like MRKH, CAIS, Turner syndrome, Primary Ovarian Insufficiency (POI), infertility and vaginismus, they often focus on the medical facts. But the reality of living with these conditions is about far more than a diagnosis on a piece of paper.

For MRKH syndrome, we run a UK WhatsApp support group, regular events and workshops. It is absolutely imperative condition led work still continues, and as founders with MRKH - this work isn’t going anywhere! It’s so important that an MRKHer can ask someone who truly understands the complexities of their diagnosis questions and seek support from those who really do “get it”.

The Rarely Project is our expansion of this work, to intertwine events and story telling with other conditions that could also help us feel less alone.

For many of us, the journey begins with silence.

Silence around periods that never came. Silence around fertility. Silence around gynaecological health. Silence around sex. Silence around bodies that don't fit society's expectations. Silence around experiences that even healthcare professionals sometimes struggle to understand.

Many people with MRKH spend years feeling like they're the only person in the world with their condition before they find a community. People with CAIS often speak about the secrecy and misunderstanding that can surround differences in sex development. Those with POI are frequently told they are "too young" to be dealing with menopause-related symptoms. Those with Turner syndrome can face lifelong assumptions about what they can or cannot do. People living with vaginismus often encounter embarrassment, dismissal or the harmful suggestion that their condition is "just psychological."

The anatomical and diagnosis details differ, but the stigma feels familiar.

There is a particular loneliness that comes with living with a condition that affects an area of life people rarely talk about openly. Reproductive health, fertility, menstruation, hormones, sexual health and anatomy remain subjects that many people find uncomfortable. As a result, those living with related conditions are often left carrying questions, fears and misconceptions on their own.

Many of us have experienced insensitive comments, awkward conversations or assumptions being made about our bodies. We know what it's like to have people define us by what our bodies can or cannot do. We know what it's like to feel invisible in public conversations about women's health and gender identity. We know what it's like to search for representation and struggle to find it.

Perhaps most importantly, we know what it's like to be misunderstood. To be rarely spoken about or represented.

That shared experience is one of the reasons we believe it's important to broaden our advocacy work.

This isn't about suggesting that these conditions are the same. They aren't. Each community has its own challenges, priorities and needs. But there is enormous value in recognising the common ground between us.

When one community challenges stigma around infertility, it helps all of us. When another raises awareness of delayed diagnosis, medical gaslighting or gaps in healthcare, those lessons resonate far beyond a single condition. When people with lived experience come together, our collective voice becomes stronger. When we see black, brown and marginalised women and people facing stigmas even more buried in cultural and societal shame, we must stand together.

At their heart, all of these communities are advocating for the same things - earlier diagnosis, better information, greater understanding, improved healthcare and a future where nobody feels ashamed of their body or their diagnosis.

We will also be pushing the boundaries of what a sense of belonging means. From women born without a womb to women who have lost their hair, or have a difference in their bodies or experiences- the opportunities for raising awareness together to uplift anyone facing stigma due to their health or body is powerful.

We’ve seen first-hand how powerful peer support can be. Finding people who understand your experience can change everything. By building bonds across communities, we have the opportunity to extend that support, learn from one another and challenge the stigma that continues to affect so many of us.

Because whilst our diagnoses may be different, the barriers we face are often remarkably similar.

And perhaps that shared understanding is exactly where meaningful change begins.

Welcome to The Rarely Project!