“The more I’ve learned about my disorder, Functional Neurological Disorder (FND), and spoken to many people like me, the more I realize how similar our stories are and how much we are ‘left in the dark.’
This was how I found out I had FND:
Neurologist: ‘Are you under any stress?’
Me: ‘Occasionally, but I’m okay now.’
Neurologist: ‘Have you had past emotional trauma?’
Me: ‘Where do I begin, Doc?’
Neurologist: ‘Read this magazine.’
*reads it fine*
Neurologist: ‘This is a functional problem, not a brain injury.’
Me: ‘Functional, as in what?’
Neurologist: ‘FND, have you heard of it?’
Me: ‘I’ve just started to learn about it through work, but I don’t really know the science behind it…’
Neurologist: ‘Go on this website, Google it, and research it. I’ll see you in 6-8 weeks. You’re fine to go home.’
Dear Doctor Free,
Please do not leave us like this. Please do not give us the most devastating information we could get. Please realize the impact of your words, and how those three little words, Functional Neurological Disorder, have sent our whole world crashing down.
Please do not assume I understand it. I don’t.
Please don’t think Dr. Google will do a better job; he can be good, but he sends my mind into overdrive. Dr. Google is telling me this isn’t curable, this can be treatable, but every case is different and only some people will recover. He doesn’t tell me if that will be me, and I need to know. Dr. Google is telling me I will be paralyzed, my life is now forever limited, and my world will never be the same again. Dr. Google is telling me it’s caused by stress, so now I’m blaming myself for getting stressed out, even though it was events and a childhood I couldn’t control. Dr. Google is telling me there’s an issue with the functioning of my nervous system, but he doesn’t explain why or what that means.
Dr. Google is telling me it’s not structural damage, but more of a software one; again, he doesn’t explain that very well either. Dr. Google is showing me people who have seizures and blackouts, but didn’t explain why or if that could be me. Dr. Google isn’t seeing me as a person, running through a thousand emotions only to be left more confused and even more terrified than before. Dr. Google isn’t giving me hope.
But Dr. Private did. Dr. Private explained my condition. Dr. Private let me know what was going on, why my trauma made me susceptible, but isn’t the sole cause. Dr. Private explained why my brain has done what it’s done, why my body is doing what it is, and reassured me it wasn’t my fault and its not all in my head. Dr. Private said its very real; it just doesn’t show on scans. But neither does autism. Dr. Private gave me hope. Dr. Private told me about the police officer who’s been paralyzed for five years. No-one gave her the help, but when she came to see him she learned techniques and got better and isn’t in her wheelchair anymore. Dr. Private was honest and explained it was a long journey, but there’s hope and light at the end of the tunnel.
Dr. Private showed me how to walk normally again, albeit 30 seconds, but I did it. Dr. Private saw me as an emotional wreck who was convinced she’d be in a wheelchair, begin to cry with excitement and relief at the fact she will one day walk normally again. Dr. Private saw me as a human going through the worst time of her life, transforming into a stronger, wiser, and braver person then she could ever picture herself being. Dr. Private knew things could change and new symptoms arise, but didn’t fill me with dread. Dr. Private gave me the boost I needed. Dr. Private helped me walk for a minute, normally. Dr. Private warned to take it slow and learn your body. Dr. Private had the time. Dr. Private listened, understood, and cared.
But… Dr. Free could have as well. Dr. Free could have sat with me for 15 minutes and explained why my brain has changed. Dr. Free needs to learn to take the time to hold my hand and explain it all. Dr. Free shouldn’t leave me in the dark. Dr. Free’s waiting list is 50 weeks; he’s going to leave me unanswered and confused for a year. But don’t worry Dr. Free, I’ll do your job for you. I’ll make it my mission to share as much as I know about this disorder and give the young 16-year-old girl who’s life’s just beginning, the 35-year-old dad of three who’s now wondering if he’ll be able to pay the bills, and the single mom of her adorable yet challenging special needs child the hope and understanding they all so desperately crave to get through the darkest time of their life.
I will spare the 15 minutes. I will spare my time to explain. I will show them what I’ve learned and how to pull through. I will show them the bad days, but the good too. I will not leave them in the darkness. I will share my light and help them shine. I will give them the best medicine they could ever ask for… I will give them hope.”
This story was submitted to Love What Matters by The Blondie Northerner. You can follow her journey on Facebook. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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