By: Kristina Bridgen
People living with Functional Neurological Disorder, also known as FND, have many daily struggles as it is an invisible medical condition. Let me backtrack here though. What is FND, you might ask? It is where the brain and body send and receive signals incorrectly, which causes many symptoms.
In my case, my symptoms are non-epileptic seizures, also known as functional seizures. In the past, I have had other symptoms that impacted my life such as gait issues and tight muscles in my legs which affected my walking by requiring me to use a wheelchair. With willpower, determination, and strength I was able to walk again.
Functional Neurological Disorder is not widely known about by our society, by doctors, and nurses, which makes it hard to live with. It is considered a disorder that is between neurology and psychiatry and often neither wants to take on the complication of a condition that is not really known about. However, with the advocacy of top researchers, specialists, and people who are self-advocates like me, more people will learn about this condition.
You may be wondering how FND affects my life and many others. I would say it depends on how often the symptoms occur, but most often they are debilitating. For me, my symptoms have come and gone throughout my whole childhood and now adulthood. There were times I went seizure-free for years and then there were years I had many hospitalizations, with visits to the ICU. It affected my schooling, my early childhood education, and my ability to keep my dream job working with children. I will never give up my goal to work with children because that is what I am passionate about. I may have to adapt, because of the way my body and brain send and receive signals as well as, learning to live with sensory overload, shutting down, and seizures. However I will find my way.
Another way FND affects me is socially. This is due to not being able to go do activities with friends. I am grateful that I have my sports through Special Olympics, but even then, there have been some challenges.
You may be wondering what may help with the symptoms of FND. Meditation before bed every night helps me sleep, but I also try meditating during the day. I often use a fidget spinner when out at stores or somewhere that is overstimulating so it regulates my body. If it is noise stimulation, I use noise-cancelling headphones. I also use grounding techniques like 5,4,3,2,1 which uses all 5 senses: see, hear, feel/touch, smell, and taste.
Here’s a little about me. I am an adult with a divers-ability. I have a passion for self-advocacy, art, playing sports, (such as soccer, and 5-pin bowling), and working with children. I have worked with infants and toddlers for three to five years at daycare/preschool and I loved each experience. I am a member of CLBC Community Council where we talk about a variety of advocacy topics in my city of Nanaimo BC. My friend started a BC People First self-advocacy chapter in Nanaimo, and I am part of it. We are currently looking for more members to join our conversations.
Overall, my hope and dreams are that Functional Neurological Disorder gets more acknowledged within the medical community and that people learn how this condition affects people who have it. It is not easy to live with, but I am determined to live my best life with this condition. If you would like to learn more about FND go to: fndhope.org
Written By: Kristina Bridgen
When all is quiet,
My body isn’t
I feel tingling in my body,
Electricity buzzing in my head,
I feel funny
No way to describe how I feel,
My body tenses up and I seize
Convulsing, foaming at the mouth or just blanking out
I lose consciousness and I don’t remember when I come too.
Occasionally I hear people saying “she is faking it”
Or that these aren’t real seizures
Let me tell you
They are real,
They may not be epileptic and appear very different.
I can tell you the feelings, I feel are real,
Embarrassment, tiredness, soreness, loosing control,
Or being too hot or cold
Can cause me to seize.
These are just some things
I go through.
Lucky to know ways to calm.
Calm, my body and mind
With mindfulness and deep breathing
I can lessen the intensity,
But sometimes that isn’t enough
To take the funny feeling away.
Needing to take medication to calm and that is okay