Chronic Illness Spotlight is a series in which different illnesses are highlighted and a Chronic Illness Warrior that lives with the illness is featured. In the last edition of Chronic Illness Spotlight, we learned about Familial Adenomatous Polyposis. In today’s edition we will learn about Functional Neurological Disorder and will feature Alison Hayes.
What is Functional Neurological Disorder?
Once called Conversion Disorder and considered a psychological disorder, the name has been changed to Functional Neurological Disorder and is considered a Neurological Disorder.
According to the National Organization of Rare Disorders, Functional Neurological Disorder is, “a medical condition in which there is a problem with the functioning of the nervous system and how the brain and body sends and/or receives signals.”
A person with Functional Neurological Disorder can experience a wide range of symptoms that include sensory, physical or cognitive.
Some common symptoms include:
- Functional limb weakness or paralysis
- Functional speech symptoms
- whispering speech
- slurred speech
- Functional movement disorders
- tremor or spasms
- Gait problems
- jerky movements
- Functional sensory disturbances
- numbness, tingling or pain in the face, torso or limbs
- often on one side of the body
Symptoms may fluctuate and change over time and some patients can have times of remission and recurrence.
For more information:
Neurosymptoms.org – a patient guide for FND
Meet Alison Hayes
Alison is an amazing, caring person whose main goal is to help others, “improve your life, connect with your sense of purpose, and celebrate every step of your journey.”
Her fight with FND has not impacted her ability to achieve and she is a contributor to FND Hope Magazine. She also works hard to help educate others about FND through her blog called Thriving While Disabled.
Briefly explain your illnesses
Functional Neurological Disorder symptoms vary widely, but are a physical response to emotional stress and trauma far beyond the norm. In my case, I have severe muscle movements, often in response to stress and anxiety. These movements are often abrupt and violent (myoclonic jerks and tonic-clonic movements), and tend to occur at the most inopportune time!
How has your illness impacted your life?
I have been on SSDI for most of my adult life, starting within a year of diagnosis. I have not been able to work full time, and the years I worked part-time was also challenging.
I spent several years unable to safely use stairs, gave up on driving over 10 years ago, have been managing urinary urgency and incontinence since I was in my early 20s.
I have had people assume I was having seizures, intellectually disabled, and/or faking for attention at various points.
How long did it take to get diagnosed?
That’s a matter of perspective. There were about 3 years between my initial severe symptoms and my diagnosis, but I was symptom-free for a large portion of that time (over a year).
My initial symptoms were likely in my tweens, but I had years of remission before my severe symptoms occurred in college.
Why do you think it took that long to get a diagnosis?
Very few doctors recognize Functional Neurological Disorder symptoms. It took a neurologist and a psychiatrist (working together) to confirm my diagnosis.
How is your life different now compared to a few years ago?
It depends on when. I am doing better than I had been when I was first diagnosed, especially psychologically. In 2016, I participated in a transformational treatment program which improved things dramatically.
Since then, my partner was severely injured and the associated stress brought out new symptoms and caused a relapse. I am doing better now than I had been when he was injured.
What do you do on you bad days to make them better?
I accept that I need to rest and recuperate, and don’t beat up on myself for not being able to follow through on whatever I had planned. I let myself get absorbed in distractions like books, movies, or games.
How do you handle the isolation you may experience because of your chronic illness?
I keep myself connected through fb and other social media, text regularly with friends, work on projects to help make my life more meaningful, and live with my partner and our cats!
What advice would you give someone that is trying to get diagnosed or is has a new diagnosis?
Once you are diagnosed, connect with others who share your condition and do research to better understand your condition.
If you haven’t been diagnosed yet, don’t give up! Keep pushing and researching until you do!
Where can you find Alison? Thriving While Disabled
I want to thank Alison for sharing her story. She is truly inspiring and I have learned a lot.
Other Chronic Illness Spotlight Articles:
- Chronic Illness Spotlight: Familial Mediterranean Fever
- Chronic Illness Spotlight: Rare Bone Disease & More
- Chronic Illness Spotlight: Ehlers Danlos Syndrome
- Chronic Illness Spotlight: Myalgic Encephalomyelitis & Fibromyalgia
- Chronic Illness Spotlight: Atypical Bilateral Trigeminal Neuralgia
Disclaimer: This blog post provides general information and first hand accounts about a serious medical condition. The words and other content provided in this blog, and in any linked materials, are not intended and should not be construed as medical advice.