Alison’s guest post is the 53rd post in the segment on my blog, called “The Reality Of…” which gives others the ability to share their story and raise awareness of the disabilities, illnesses, impairments and invisible illnesses that they have.
Hi, I’m Alison Hayes, and I’m from Union Beach, New Jersey, USA.
I have Functional Neurological Disorder (FND), a history of depression and anxiety, and have recently developed chronic migraines. We’re calling them migraines with aura, but I only saw auras when I was a child, when I first had headaches in my pre-teen years.
So, FND is actually a very common condition. It appears to be the second most common reason people go to the neurologist (the most common being headaches), but it’s frequently misdiagnosed and is also often missed as a diagnostic option. Until the early 2000’s, it was considered a form of mental illness and was diagnosed by a neurologist and psychiatrist working in tandem.
It was often a diagnosis of elimination, and even today many neurologists fail to recognize it, though often it is suggested when neurologists start to run out of diagnostic options.
People with FND have a variety of symptoms, including uncontrolled bodily movements, myoclonic jerks, non-epileptic seizures, bouts of bodily weakness, stroke-like symptoms, limb paralysis, cognitive fogginess, bladder or bowel dysfunction – basically any neurological symptoms.
What makes FND different from the neurological conditions it may resemble is that there isn’t a mechanical cause to the symptoms. What I mean is that, for example, epilepsy causes seizures, but epileptic seizures can be seen on an EEG, and are known to be the result of an electrical storm in the patient’s brain.
An FND patient with seizures would not have an abnormal EEG, but their symptoms would appear the same.
Most people with FND have multiple symptoms, none of which have a discernible cause, but which often will worsen under stress and decrease or disappear with the use of distraction techniques.
Symptoms are also not necessarily consistent, and also can shift to affect different parts of the body or cause entirely different symptoms in the patient. There are now confirmatory tests, such as the Hoover test, but it’s best to have the diagnosis confirmed by an FND-aware Neurologist.
In many cases, FND appears to be triggered by some form of trauma, and many people with other conditions may develop FND. Recently, neurologists have become very interested in researching and studying FND as MRI and other technologies are now useful for observing FND and how it works.
Their studies have indicated that FND is associated with dysfunction in the part of the brain that acknowledges control over actions. It appears that people with FND have their brains send signals that cause their symptoms without acknowledging that those signals were sent.
To use a computer analogy, people with FND have a software problem, not a hardware issue.
How It Affects Me
My FND primarily expresses as muscle movements – originally it was severe myoclonic jerks, rocking back and forth, shaking, limbs not doing what I expected and other dysfunctional movements. Sometimes I would walk strangely, sometimes rock back and forth, sometimes I’d have sudden full-body spasms. Other times, I would appear fine.
Another major symptom I had from early on was bladder dysfunction, initially, it was increasingly severe urinary urgency, but it has shifted over the years, sometimes worse (recently have had periods with temporary loss of control), but with multi-year periods of it being minimally problematic (just an occasional leak or drip).
Over time, I have shifted my symptoms to more often occur to lesser degrees and in smaller joints. The full-body symptoms occur more rarely, but I now have times where my wrists shake, my ankles flex, or my jaw stretches open or snaps shut.
Overall, my symptoms occur less often and less severely than they did originally, but the severity shifts depending on my life stresses and my mental, emotional and physical state.
I also now have sensory symptoms, such as numbness in my lower left leg which is always there, but shifts in severity between barely noticeable and severely painful. Because of my FND symptoms, I’m on SSDI (Social Security Disability Insurance), don’t drive, and cannot reliably work for an employer.
Stress in pretty much any form will increase my FND symptoms, including things like getting sick (immune system is stressed), a cold breeze, exercising, any strong emotions (positive or negative), anxiety, needing to stay still, and my personal triggers like ladders and ambulances.
Every symptom I have, I figure out how to manage and live with, so every time I have a major shift in my symptoms (increases are often triggered by stressful events, but sometimes things shift simply in response to things staying stable for a while), I have to take some time to mentally and emotionally adjust to the symptom and try to figure out how best to manage it.
Learning to Adapt
I have had to make a lot of mental, emotional, and physical adaptations to live better with my FND. When my symptoms first started, I was less concerned than those around me, but was still concerned as my symptoms worsened. I had to completely transform my career plan – my symptoms became debilitating about two years after I completed college. My degree had been in biology and my planned field had been fishery biology.
With my FND symptoms, I could no longer reliably do laboratory or fieldwork (the pressure to handle small equipment or delicate creatures set my symptoms off), so after taking some recuperation time, I decided to switch careers and study Geographic Information Systems. I spent years working part-time in that field before I decided to go to graduate school. The stresses involved in graduate school severely worsened my symptoms, but after graduation, I found an amazing treatment program and emerged from that in the best shape I’d been in since prior to diagnosis!
I’ve needed to be more flexible mentally and emotionally, and give myself breaks and recuperation time before and after every significant thing I’ve worked on. That’s true both large scale and small scale. My weeks are often divided between high activity days and quiet recovery days. Every time I select a major thing in my life to change or adjust, I need to spend some time recovering after that change.
Some of those are predictable (like deciding to go to graduate school), others are unexpected (like my partner fracturing his acetabulum or a symptom shift). I’ve learned that with each major change, I once more need to take it easy for a while, figure out how to live with that specific symptom, what effects it has, and what my new normal is going to look like.
As an example, I developed a symptom where my mouth would suddenly open wide, then my teeth would slam into each other when I closed my mouth, with a lot of force. That symptom became my body’s go-to symptom for a couple of months. The repeated clenching and slamming increased muscle tension in the area, causing me additional and more severe headaches. I discovered that if I chewed gum when those symptoms started, the distraction of chewing the gum generally prevented the symptom from happening, so I always carry some gum with me now in case that symptom starts up.
I also recognize the conditionality of any plans I make – I rarely promise to do something at a specific time or place, but instead, make plans with the understanding that they will happen as long as I feel my symptoms are low enough to be able to do so. For me, a lot of it is about mindset. I need to put less pressure on myself (that’s stress too) and be flexible in my planning.
Changing As A Person
It’s hard because prior to my FND I was often hyper-social and would often make a lot of plans and commitments. I actively pursued exciting and potentially dangerous work, and wasn’t particularly patient.
With my FND, I’ve been forced to step back, play things safe, go more slowly, give myself rest breaks. I now practice mindfulness and meditation regularly, but can’t safely do yoga or tai-chi due to my movement symptoms.
I’m cultivating patience for both myself and others. I’ve found that I mostly am friends with people managing some form of disability and/or mental illness. These are people more apt to be understanding, to empathize. They ‘get it’.
I also reconsidered my career goals, and honestly the entire ‘career’ concept. I select projects for myself, some of which have the potential to make money, others to improve my quality of life. I can only do one or two projects at a time, and select my project carefully, then have that as my primary focus until I either complete it or something else takes priority.
Thriving While Disabled has been my project for the past two years, but prior to that I was managing my and my partner’s health while we managed his acetabular fracture. Prior to his injury, my project had been using the skills I learned in the MoRe program to improve my symptom management to the point where I could work again.
I think a lot about the concept of purpose economy and the significance of a sense of purpose and have decided that having a purpose is central for my emotional wellbeing. So, I find projects that give me purpose and work towards them. When I’m going through a rough patch, my purpose is to get better. When I’m doing better, I’m working towards these other goals. I’m hoping that Thriving While Disabled will be a long-term project that will keep evolving with me.
My Favourite Superhero
I really love Deadpool. He’s a bit of an antihero and does things his way, no matter what. He breaks the rules in amusing ways (including breaking the fourth wall, which I enjoy), and can turn anything, no matter how serious, into a source of amusement and entertainment.
While I take life more seriously, I sometimes wish that I could lighten up that little bit extra and laugh at more of life’s challenges.
Thanks Alison for raising awareness and sharing your story with my readers and me!