Anonymous Testimonial: Functional Neurological Disorder, and how it affects me

It’s not a disability which is easily diagnosed or even to be treated. It comes under “Unknown Disability” and symptoms can differ with each patient. I was diagnosed about 4 years ago after having several brain scans, tests and assessments, when they were looking at my symptoms for another disability which causes me to have “brain fog”.

For me, FND can affect my day to day functions when it comes to thinking, speaking, digesting information and sometimes movement. If you’re unaware, you wouldn’t be able to tell and it can be quite difficult to explain. I have had to make lifestyle adjustments rather than relying on medical interventions.

Walking can be difficult when I am tired. Who knew you would have to concentrate to walk?! I do! Just to reduce the risk of falling, walking into things or tripping over my own feet. It’s exhausting! My physio has nicknamed me Calamity Jane.

Losing my balance is quite frequent, hence the falling. To the unaware I might appear like I am drunk. When really I maybe experiencing fatigue which affects my ability to concentrate to walk or stand still for a period of time. I do use a walking stick sometimes, but that can cause problems in its self.

Speaking, I  can come across slurred or I might forget words to complete a sentence. Again, it can appear like a speech impediment. I might get a funny look or even ignored sometimes, made to feel my comments don’t count.

Memory and thought, can just look like forgetfulness which is common for anyone. I think I find this most frustrating when I’m in meetings or with others who have less patience to wait for me to remember what I wanted to say. In the early days, this made me more recluse. I felt so conscious that people would treat me differently, thinking I’m not capable of doing my job.  When you’re introduced as being shy or lacks confidence because the person doesn’t understand can be quite deflating.

It has been a real challenge, but with organisations who support Hidden and Unknown Disabilities, my confidence in speaking out about my conditions has improved although there is a long way to go.  

Ways I find easier to manage communication with others:

• Preparation for meetings – trying to get a background on what is expecting and have my written prompt notes to ref too. With my current manager, she will prep me on what to expect and who would be there and if I would be expected to say anything.
• Lists and notes to help me remember previous discussions – during a meeting I would make my own notes and then follow up with my manager to ensure I have understood correctly what has happened or said. If I am familiar with a colleague who was on the same meeting I would have a discussion with them and hear what they picked up from the meeting and add anything I have missed to my notes.
• I encourage written communication because it’s easier – having info via email or text is easier so I can read and refer back at my own pace. Sometimes I would have to read numerous times in order to absorb the information.

Different ways I am trying to change:

• Make excuses for myself, my inability
• No eye contact, turn my camera off
• Make a joke of my inability before they do
• Avoid meetings or interactions where possible
• No public speaking with large groups

This is the first time I will be sharing the insight to my condition to spread awareness. I hope it can open the discussions and encourage others to share as well.