I never in a million years thought I would be here. I used to say “I could never … No, I could never.” We need to start talking to ourselves differently. Start saying the sentence “I can do hard things …” Just that sentence, “I can do hard things …” ~ Mariska Hargitay
Ever since I was in primary school, I insisted I would be famous one day. Although, I’m not quite sure 10 year old me was eying up fame as a medical mystery … Actually, when I think about it, I can say for certain this never made it to my 10-year-old self’s manifestation board because Littlest Lucy barely coped with having to sit in the GP waiting room! It’s strange the fears you overcome, and the situations you survive when there are no other options. When you’re hitting gold on the symptom jackpot, there is no other option available beyond survive.
The pipeline from “there’s nothing wrong with you” to “it’s a rare condition” needs to be studied deeper. Alongside the fact most rare conditions are not as rare as they claim. Realistically, the system simply massively under-diagnosed.
The other phenomenon that definitely needs studying is how the medical system is happy to label patients as medical mysteries. Not to mention impact of bouncing between consultants and departments just to try and get some answers. Nobody ever asks what it feels like to become some sort of weird prize in a game of pass the parcel designed to inflate the ego of whoever takes on the challenge of your case.
In reality, the process of jumping from specialist to specialist is just the tip of the iceberg. Once that label of medical mystery hangs around your neck, you’re basically now a hospitalised Paddington Bear. You can throw in the consultation rooms, outpatient appointments, needles, blood tests, and scans, but still not chip away anything more than the outer layer of that iceberg. The really deep stuff lies complexly intertwined somewhere in the sights witnessed during the admission process.
I think calling it a rollercoaster of emotions is a little on the polite side. The stories left to tell probably definitely closer to the concerning end of the trauma to comedy continuum. But that’s the thing about medical trauma, it has a strange habit of gifting its survivors with a rather dark sense of humour.
This is the story of how I became my own Olivia Benson …