The Struggle to Accept the Diagnosis of FND
Way back in 2000 when my neurological problems began, I was shocked when the horrible, exhausting, uncontrollable seizures I was experiencing were written off as a psychological problem. The first time a neurologist tried to explain the diagnosis, he was kind, but his words didn’t make sense to me and I couldn’t overcome the thoughts in my head of “They think I’m making this up! They don’t believe me! What am I going to do? How am I supposed to convince them that this is real?”. Later that night in the hospital when I was having a prolonged seizure, a nurse trying to administer medication through my IV screamed at me, “Just stop it! How are we supposed to help you if you won’t stop shaking?”. I felt devastated. Here I was, going through the worst health crisis I had ever faced, and the medical professionals that I had trusted to help me were accusing me of faking my symptoms! At that point in my life, I was honest to a fault, and to be accused of making up something so horrifying felt like a slap in the face on top of the terror I was experiencing from the seizures.
As the days of symptoms became weeks and months, the confusion and anger that I felt about my illness became overwhelming. As I researched my diagnosis of Conversion Disorder (the term used for Functional Neurological Disorder back then), the belief that the diagnosis was wrong became stronger. The articles I read referred to hysteria and attention-seeking, and that certainly didn’t describe me! I was the calmest, most down-to-earth person that I knew. Looking for attention was the opposite of what I did. I hated the spotlight and much preferred to be unnoticed.
The few professional journal articles that I found describing Conversion Disorder noted that it was most common among poorly educated women from lower socioeconomic groups. What???!!! That wasn’t me at all! I had a master’s degree from a top-rated graduate school, for Pete’s sake! I was in the medical profession with a great job that I loved and was respected in my field. What the heck were these stupid doctors doing diagnosing me with this! Didn’t they have a clue about who I was? This couldn’t possibly be something that I could have! Everything that I read about this disorder could not possibly fit with the person that I knew that I was.
But…. the diagnosis was correct.
True, I was not poor or uneducated. Many of the descriptors of the condition at that time were just plain wrong. The truth is, ANYONE can have Functional Neurological Disorder. There are no traits that either condemn you to or protect you from getting FND. Like any illness, sometimes you just have the vulnerabilities and circumstances that add up to disease.
It took awhile to recognize that yes, this illness could happen to me too. I spent years fighting the stigma, mostly self-created, of having a disease labeled psychological. Decades of psychotherapy led me to the place I am now of really not caring what someone calls my illness or how they think of me because I have it. I know myself and know a strength within me that I never would have discovered without FND. Sadly, I believe that many people fight their acceptance of this diagnosis because of what they falsely believe it says about them as a person and their character.
What a diagnosis of FND says about me-
- I have a neurological disorder.
Period. The end. That’s all you know about me from my diagnosis. You don’t know that I’m a loving, generous person. You don’t know that I’m a great cook, that I make fabulous French macarons. FND says nothing about my intelligence, my perseverance, my compassion, or my loyalty. It doesn’t tell you what kind of a wife, mother, grandmother, or friend that I am. Functional Neurological Disorder does not define me. It’s just a crummy disorder that I ended up having. Maybe it’s psychological, maybe it’s not. I really don’t care either way.
Don’t let false beliefs about a label keep you from getting better. There was a time that I believed that recovering the function I had lost would mean that the doctors were right, that I was a crazy mess (not what most of them were saying, but how I heard it).
You are NOT your illness! You are an amazing person with strengths and skills that FND has no right taking from you. It takes time and work, but you can learn to calm your nervous system and have fewer symptoms. You can learn to budget your energy for the things that are most important to you. Life might not ever return to how it was before FND, but it can still be satisfying and fulfilling. And isn’t that what we all want?
Wishing you better, brighter days in your future!
4 Comments
This is a wonderfully insightful and honest reflection which should be read by all those working in neuro services. We have to get our knowledge, skills and communication right in order to stop cynical derision of people living with FND by those clinicians who actually make symptoms and the seeking of a different diagnosis so much worse. Great blog!
Thank you so much for your kind comment, Sarah. I feel strongly that so much of our prognosis lies in the hands of those delivering the diagnosis. One of my future goals is to speak to neurologists about how to best serve their patients in this area. For specialists in psychology, I find it striking that many don’t realize their strategies reinforce disability rather than recovery.
U guys rock##! İve lived this for a couple years…there are nerologist who get it…took a while to find them….these articles and published papers have given me the brain fuel and hope to live it out…”it is what it is”….to quote my awesome nerologist at the Gainesville FL VA😜
Thanks, Doug! I’m so glad you found an awesome neurologist!