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Why My Functional Neurological Disorder Diagnosis Felt Dismissive

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When we are injured or become ill, naturally we tend to expect that x-rays and tests will discover the reason for our pain or health issues. We also expect there will be treatment options available and that we will quickly receive a treatment plan for our injury or illness. That’s exactly what I thought would happen when my health drastically changed. However, this was not to be the case.

I had repeated appointments with my doctors and various specialists, had countless tests, and was even admitted to hospital, but nobody could tell me what was causing my debilitating symptoms and all my test results were “normal.” I couldn’t understand it – obviously, something was causing my symptoms, I wasn’t imagining the excruciating muscle spasms or the fact I couldn’t walk – so why could nobody tell me what was happening?

Initially, I was confident that the mystery behind my symptoms would be solved, that I would receive treatment and that I would get back to “normal.” However, as time went on, that confidence faded and was replaced by confusion, fear, and frustration. I started to feel like my medical team was becoming increasingly dismissive of me and that they didn’t believe what I was telling them.

I had doctors tell me that I was “focusing too much on [my] symptoms and medication” and that I “have to focus more on moving forward and less on [my] symptoms” which made me feel awful, like I was doing something wrong because I was struggling with the severity of my symptoms. I also had a consultant who didn’t even appear interested in seeing me or listening to anything I had to say – I felt like an inconvenience who was wasting his time. Then, another medical specialist I had been referred to completely refused to see me because my symptoms “sound like they match a pre-existing condition” which left me feeling abandoned, almost like they were telling me to “just deal with it.” These experiences had a negative impact on my mental health. I spiraled into a deep depression and developed severe anxiety – issues that I continue to experience.

Over two years after my symptoms first started, I attended an appointment with a consultant who seemed to assume that I already knew I had functional neurological disorder (FND) because, after I explained my symptoms, she immediately began by saying “Well, people with FND…”

I interrupted her to ask, “So is that what I have?” That was how I received my diagnosis – by questioning an assumption. This frustrated me — I felt like I had been excluded from my own diagnosis and that my doctors already knew my diagnosis but hadn’t told me.

Even though I had just received a diagnosis, I wasn’t given much information about the condition, except that it was an issue in the functioning of the brain and nervous system, and that there was no treatment or cure. I was given a scrap of paper that had some websites scribbled on it and told to “read up on it.” I wasn’t given any follow-up appointments. It felt like the consultant had just dropped a bombshell and then left me to process it alone. I felt lost and scared, and all I had was a diagnosis and a scrap of paper.

One of the websites on the scrap of paper was “www.fndhope.org” — a charity that provides information and support to people with FND. They even provided me with a Patient Information Booklet free of charge. I feel that this booklet should be provided to patients when they are first diagnosed with FND. It isn’t fair to expect patients to seek out information themselves, especially when they have just received a new diagnosis.

I thought having a diagnosis would change how I was treated by medical staff. However, if anything, things felt even worse and continue to feel worse. I often feel that any new symptoms I encounter are quickly “written off” as “FND flare-ups” and I feel like a burden for even seeking help. Research conducted by FND Hope shows that over 80% of patients with FND feel they have been treated negatively because of their diagnosis. Just knowing this little piece of information helped me feel less alone in my struggles.

The information and support I have received from FND Hope and The Mighty have started to boost my self-worth. When you feel dismissed by those you expect will help with your health issues, it can cause feels of isolation and fear. I am thankful that I have received an understanding of my condition from my own research and peer-to-peer support. It’s unfortunate that I was not given such things by my medical team!

Getty image by Kerkes.

Originally published: April 17, 2021
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