Grace Lloyd, from Perth, wrote this when she was sixteen, just after she was diagnosed with MRKH. She didn’t write it for publication. She wrote it to help her mum and closest friends understand what it felt like to be told.
It worked. The people who read it told Grace it helped them understand, and at first, feeling understood was one of the hardest parts of her diagnosis.
Grace first got in touch with us in 2024, then waited until she felt ready to share it. She’s sharing it now in the hope that it helps other families, partners and friends understand what that moment can feel like.
Thank you, Grace, for trusting us with something so personal.
I feel like when you get told something like what I got told you kind of step out of your body for a second.
nothing feels real.
You start staring at the door and wondering what it would be like to walk through it and then through the next and the next and out on the street and into the cold air.
How would the gravel feel on your feet?
Would the birds chirp like they always did?
Because nothing had changed, really, but everything had. Like- the issue was always there but now you’re aware of it.
It’s sort of like if a war is going on and then you’re told about the war, it makes you sad but you not knowing about the war doesn’t change the fact that there was one.
There was always a war, and you now knowing about the war, doesn’t mean you don’t still have homework due. And it doesn’t mean you don’t still need to feed your cat.
The fact that you now know that there is a war doesn’t change anything because there was always a war and you were never fighting in it.
There will always be a war somewhere and sometimes you wish you didn’t know about these wars, because it makes you sad, but then, if you didn’t know about the war and you tried to go to that country, and you bought a ticket and you packed your things and you went to the airport... and your flight gets cancelled because of the war, would it have been worth being ignorant of the war until that moment?
Or would it have been better to have been told about the war before you purchased your ticket?
In the end you were always going to find out about the war and the war was always going to make you sad, but finding out about the war before you buy your ticket gives you more time to prepare for the disappointment of not going to that country.
When you get given something like this to digest you aren’t thinking about “well what does this mean?”
You’re wondering if the gravel on your feet will still feel the same, and you’re wondering if the birds will still chirp the same way when you sit in the park and watch them.
In that moment, so much has changed but literally nothing has.
And it’s so hard because even if you go for that walk, and the gravel still feels the same, you’ll wonder if your feet still feel the same to the gravel.
Sure the gravel hasn’t changed at all, but maybe you have.
You’ll walk past those birds, and even if they’re still chirping, they’re staring at you now as if they know, and it feels different.
You can’t look at your dad, or your sisters, or your friends, because you feel like they all know.
Even though they don’t.
The way their eyes look at you hasn’t changed a bit, but the way that their eyes feel on your skin has.
Their glare is piercing and agonising.
So yes, I was sitting in that chair, listening to the doctor explain to me what Mayer-Rokitansky-Küster-Hauser syndrome was.
But I wasn’t really sitting in the chair, I was walking on gravel and watching the birds chirp in the park and feeling the cold air on my skin.
Grace Lloyd, Perth, WA
