By Orkney Fibromyalgia Sufferer
If by chance you picked up this piece of paper. I would like to thank you for reading it and I hope that you related to it somehow. My greatest wish is that it made you feel less alone and it leaves you feeling that someone, somewhere understands you.
Around a decade ago after a long period of illness, I finally received a diagnosis. There was an answer to why I had been so unwell for so long. The diagnosis was FND – Functional Neurological Disorder.
How did I feel about my diagnosis?
Initially, I felt relief. It was confirmed that I wasn’t mad or making my symptoms up. There was a valid reason as to why I had been so very ill for so many months.
The brief moment of relief was quickly followed by despair. Why you ask? There’s no cure for FND. Not only is their no cure, the NHS do very little to help those with the condition.
The appointment I had with the neurologist months after my brain scan, was deliberately short in my opinion. It was set up in a way that there was no opportunity to ask questions. It consisted of a thorough physical examination followed by a quick 10 minutes to inform me of my diagnosis and inform me there was no cure before swiftly showing me the door, before I had the chance to ask any questions. A piece of paper with a website was shoved into my hand, followed by the “it’s time to leave” look was given. The neurologist’s assistant showed me the door.
The feeling of relief very quickly turned into shock and despair. I felt completely abandoned by our healthcare system. All they had given me was a website to look at by myself. There was nobody available to ask questions. No treatments are on offer. No more specialist appointments now I was diagnosed. I realised I had to navigate this myself. Just me and the internet for company.
Many years on. Despite everything I have learned. I can honestly say that I have no idea how to manage this condition. In the subsequent years that followed I was to receive a diagnosis of me/cfs and Fibromyalgia. The symptoms of all 3 conditions are interwoven and almost impossible to separate.
What I can say is, there is hope. Where will you find it? In small pockets of the chronic illness and neurodivergent community. Like all communities, there are good and bad. I learned not to be put off by haters or jealousies from others. There is also hope within you. Your drive to understand this condition and manage its symptoms will act as a mirror to your strength.
Be you. Your fantastically original self. Don’t allow anyone to dull your sparkle.
Every day is a school day. Allow yourself to be open to the knowledge and experience of others. But don’t let them define you. Take what you need and be on your way. Continue your quest to be the best version of yourself.
FND – The Neurodivergent in me
Just today, after more than a decade of living with this condition. I learned that FND comes under the neurodivergent umbrella.
I was blown away by this. Writing this 4hrs after learning this I am still shell shocked.
Why did I not consider this before?
I have for the past couple of years wondered if I may have ADHD or something similar. I haven’t sought a diagnosis for two reasons. One because I don’t want another label and two because I feel that it would make no difference to my life.
I have spent so many years getting to know the “new” me that a diagnosis of ADHD or something similar, really wouldn’t change who I am.
I will however dip my toe into the neurodivergent world now in front of me. Learn about neurodivergence and what it means for me.
Well done for getting to the end. I hope you enjoyed reading about my experiences. My hope is it left you feeling inspired. You are the master of your destiny. The Captain of your ship. Go forth and prosper my friend.
Click on this link for more information: The Brain Charity
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