How it started

I was living an adventurous life, running a business, travelling around the world and my fitness was great. Well, that’s what I believed. I didn’t think about illnesses often until I began feeling fatigued. I thought it was just that time of the year (winter), and when I went to have my bloods checked, I was told I was healthy. The medical staff said it was just low Iron and Vitamin D because of my ethnicity.  A few months later, I experienced:

• Involuntary movements
• Functional seizures
• Drop attacks 
• Memory loss
• Fatigue

Medical Trauma

It was as though someone had served a menu of symptoms, and I was wondering which one to battle every day. I did not have the best experience with my medical staff; I was told to be more positive. A couple of trips to A&E ended with the same narrative of being told that I was sensitive. 

It was the first time I had been to A&E. I thought the medical staff were meant to help, but I was wrong. I fought for an MRI scan, and my test results revealed nothing. I was assured by my neurologist that I just had to go back to what I was doing before. They said you have something called ‘FND’. I didn’t know what that actually meant, just that there was no clear pathway or treatment plan. There was an assumption that it wasn’t a big deal, so people around me thought it would pass. 

I found it tough; I was bedridden for months and couldn’t really see a way out. I’d spend hours staring at the ceiling, wondering what every hour of pain looked like. 

Moving Forward

After a year, I had to face the fact that no one was coming to save me. The first thing I did was find a private therapist, one that went on a journey with me and understood the culture I came from. I then changed my medical practice and was finally referred, although it took a while, I finally felt listened to. It meant accepting that my life had changed and I wasn’t going to be doing the things I was doing before. I began podcasting ‘A Spoonful of Recovery’ and set-up www.aboutme.group to help advocate with lived experiences. I found sharing stories helped, even from different illnesses, because the experiences with medical teams and society in general are not too different.