For as long as I can remember, I’ve always wanted a family of my own. I’ve always loved children, and wanted some of my own.
But with this new diagnosis, I find myself what the future might look like for me?
Will I be alone? Will I find a way to have children? Or could I be one of the few for whom this will be a death sentence?
It’s a lot to think about when you’re barely in your 20s yet. There’s so little research that even the doctors can’t answer my questions. I just have to hold tight, wait, and hope.
The first time you go on a rollercoaster it’s fun, but when you have to ride or again and again and again then even on the good bits you’re still just waiting for the bad bits because you know they’re coming. I’ve had lots of negative experiences so I kind of go into appointments with an expectation now.
It’s all a big game- you’re not only fighting the healthcare system but also to. It takes a lot to go and actually ask for help, and it builds up level by level, and then finally getting to the doctor is like the boss level- and the prize is being listened to. That shouldn’t be the prize, but we’re not always taken seriously. I’ve felt like I needed to lie and exaggerate to advocate for myself and to be taken seriously.
Healthcare professionals can sometimes be irritating or inconvenient, sometimes they get in the way of what you want to do- but in the end it’s very important to have them, and we probably wouldn’t be here without them. I guess they’re quite like bees.
This is me coming in as a small wet cat from the rain in a sort of purple and black cloud to represent that this was a terrible time. And then this is like healthcare picking me up and like holding me in their arms, and then to a very content cat sitting in sunlight. I did meditation workshops with my psychologist and I came out and was like oh man this is like what peace feels like. That was a very cool day.
I wanted a way to visualise blah blah blah blah blah and I’m just tired of hearing all of this
I feel like I’m really small sometimes because no one understands.
There’s me, my house is burning down and I’m shouting for help and the fireman says but this brick looks fine. The big issue is the lack of connection between different specialists; they are not looking at the bigger picture.
It’s like a maze around the doctors begging them to listen to you and they don’t listen