Classify FND as a neurological disorder under SSA
Classify FND as a neurological disorder under SSA
The Issue
Why This Petition
My close friend has been living with Functional Neurological Disorder (FND), a condition that severely impacts her quality of life. Despite her struggles, she is currently unable to receive the disability benefits she desperately needs because FND is not classified as a neurological disorder by the Social Security Administration (SSA). This lack of recognition adds to her burden, making an already difficult situation even more challenging. You can read her story below.
Functional Neurological Disorder is a complex neurological condition characterized as a "disorder that affects the way your brain sends, receives and processes messages", yet it remains underrepresented in medical and governmental frameworks. According to the Cleveland Clinic, "in FND, the signals can get interrupted, and that leads to real symptoms." People with FND experience symptoms ranging from tics, dystonia, tremors, functional seizures, fatigue, mobility issues, to cognitive impairments, all of which disrupt their daily lives. Despite these evident challenges, the absence of official recognition by the SSA means they face hurdles in accessing crucial support and resources.
The exclusion of FND from the SSA’s classification of neurological disorders is not only an oversight but also a failure to acknowledge the real struggles and needs of thousands who live with this condition. Including FND as a recognized neurological disorder under the SSA would enable individuals living with this disorder to access necessary disability benefits. Such recognition would not only improve the quality of life but also indicate an important step toward greater understanding and support for those living with FND.
We urge the SSA to reevaluate its classification criteria and recognize Functional Neurological Disorder as a legitimate neurological condition. This change is crucial for enabling individuals with FND to receive the disability support they need to live with dignity and independence.
Sign this petition to advocate for classifying FND as a neurological disorder by the Social Security Administration.
Living with FND
Before my life with Functional Neurological Disorder, I considered myself to be an energetic, ambitious, resilient individual. It was my senior year of high school, and the majority of my classes were through the local community college. I was on the dean’s list with a 4.0 GPA, on track to be valedictorian, and a student leader implementing a classmate connection program for my early college program across the state with some of my closest friends. I had a rich social circle. I enjoyed hiking daily, and I was a powerlifter about to attend my first competition where I was on track to set state records.
After developing FND post-COVID infection, I failed my first classes, lost my valedictorian track, and had to step away from being a student leader. I lost my ability to walk any significant distance, let alone hike or lift weights, and watched my friends graduate before attending universities when I was forced to drop out. In the worst cases, friends accused me of intentionally faking disability in order to escape the responsibilities I once thrived on.
Becoming disabled happened abruptly. I became ill with the COVID-19 infection, and despite never being hospitalized, could not seem to catch my breath after recovering. A few months later, on my father’s birthday, I would be rushed to the ER after passing out and experiencing “strange” symptoms upon awakening. Over the next two weeks, I would return to the ER five times with increasingly severe symptoms until, eventually, experiencing my first functional/dissociative seizure (also known as a non-epileptic seizure). At the time, we had no clue what was going on and neither did the medical staff that saw me. Those experiences marked the start of a pattern of dismissals, false accusations, and medical gaslighting.
When I share that nearly every individual with FND has had experiences like mine, I do not say that lightly. Being bedridden, requiring help to eat, use the restroom, get dressed, go anywhere, all while attending countless appointments where we have to prove to providers what is happening is real: doubt about the neurological veracity of our symptoms are things we are forced to face on top of trying to find out what is medically wrong.
It took rejections/denials of care, and saying ‘nothing is medically wrong’ from every hospital in the pacific northwest, having personal information leaked to the local medical community, eventually leading to moving states in order to receive unbiased care in order to avoid being told my seizures, loss of ability to walk, chronic pain, chronic fatigue, and more was psychosomatic, a hypochondriac reaction. I was accused of drug seeking and told it was “just anxiety”. I would finally see an exceptional integrative neurologist who confirmed what I was feeling was real, not caused by stress and anxiety, and that things could improve.
Things would improve as I went through occupational therapy (paid out of pocket), specialised psychotherapy (paid out of pocket), physical therapy (partially paid out of pocket), acupuncture, OMT, chiropractic care, hypnosis, I even tried yoga. The results of the multidisciplinary treatments meant I mostly regained my ability to walk, though I require mobility aids (paid out of pocket). I have learned many ways to help manage my seizures, and take comfort in knowing they are real, as well as how to (mostly) prevent injury during them. Unfortunately, other FND patients like myself suffer significant roadblocks from insurance which continues to reject/deny coverage in addition to lack of understanding from the medical community.
Despite my symptoms improving, that doesn’t mean they are gone. They still significantly interfere with my life. I can’t work, can’t safely live alone, can’t drive, and largely depend on my family to help me in day to day life. I’m fortunate to have what I have, but still face limitations others are frequently shocked by. A disabled life is an expensive life, and we need all the help we can get. Unfortunately, many treatments are not covered by health insurance and HMOs. That means paying out of pocket, which most people do not have the means to do. I have had to cease many treatments due to cost in order to provide for my basic needs. Worse still, I frequently encounter people who feel the need to inform me that FND is a psychiatric disorder, “just anxiety”, and if I “try hard enough” things will go back to normal. This is incorrect and insensitive. Fortunately, more and more research is coming out proving just how real FND is. The National Institute of Neurological Disorders has a fantastic overview that reflects this.
However, the Social Security Administration still operates on outdated, offensive, incorrect information. It calls FND a somatic condition under section 12.07 of Mental Disorders, while using the inaccurate and pejorative term “Somatic symptoms and related disorders”. So, not only do we have to prove that we cannot work and face significant enough daily limitations to receive aid, we also have to spend all that effort using the very rhetoric thrown at us to justify a lack of need for care. This is unjust, traumatic, and far too commonplace to be accepted. FND is a rule-in disorder (meaning there are positive signs for its occurrence, as well as effective treatments) that is neurologically based. We are still learning more about it, but the very least we can do is treat it as it is: a debilitating neurologically based disorder that affects thousands of people in a variety of ways. There is currently no cure, but treatments can help, if only we are able to receive adequate resources for basic needs. For that to happen, we need to address this disorder as it actually is so it can reach the people who need it.
As I continue learning more and more about my condition and how to manage it, I dream of one day being able to live more independently, with more agency over my decisions, if not my body. This is made near impossible if I cannot work a full-time job, let alone drive to one, and paying for aids isn’t an option if money is only able to cover basic needs. I have applied for SSA, and my claim was denied because it was ‘not a neurological disorder’ but a ‘mental one.’ I refuse to receive aid only if I agree to comply with their offensive rhetoric, and know that each person who signs this petition makes a marked difference for positive change. Together, we can create change. Please sign this petition, so that thousands like me have a chance to create a life understanding that what we experience is real, and that there is hope.
Letter to Policymaker Template:
https://docs.google.com/document/d/1CDk4hVqFzhFWgXEa8RzvPqicB3ogq_ah-P6i8HWXHlo/edit?usp=sharing
Sources:
https://pmc.ncbi.nlm.nih.gov/articles/PMC8844274/
https://pmc.ncbi.nlm.nih.gov/articles/PMC7850207/
https://www.sciencedirect.com/science/article/pii/S187874792500090X
https://pubmed.ncbi.nlm.nih.gov/38674056/
https://www.ninds.nih.gov/health-information/disorders/functional-neurologic-disorder
Resources:
FND Hope
74
The Issue
Why This Petition
My close friend has been living with Functional Neurological Disorder (FND), a condition that severely impacts her quality of life. Despite her struggles, she is currently unable to receive the disability benefits she desperately needs because FND is not classified as a neurological disorder by the Social Security Administration (SSA). This lack of recognition adds to her burden, making an already difficult situation even more challenging. You can read her story below.
Functional Neurological Disorder is a complex neurological condition characterized as a "disorder that affects the way your brain sends, receives and processes messages", yet it remains underrepresented in medical and governmental frameworks. According to the Cleveland Clinic, "in FND, the signals can get interrupted, and that leads to real symptoms." People with FND experience symptoms ranging from tics, dystonia, tremors, functional seizures, fatigue, mobility issues, to cognitive impairments, all of which disrupt their daily lives. Despite these evident challenges, the absence of official recognition by the SSA means they face hurdles in accessing crucial support and resources.
The exclusion of FND from the SSA’s classification of neurological disorders is not only an oversight but also a failure to acknowledge the real struggles and needs of thousands who live with this condition. Including FND as a recognized neurological disorder under the SSA would enable individuals living with this disorder to access necessary disability benefits. Such recognition would not only improve the quality of life but also indicate an important step toward greater understanding and support for those living with FND.
We urge the SSA to reevaluate its classification criteria and recognize Functional Neurological Disorder as a legitimate neurological condition. This change is crucial for enabling individuals with FND to receive the disability support they need to live with dignity and independence.
Sign this petition to advocate for classifying FND as a neurological disorder by the Social Security Administration.
Living with FND
Before my life with Functional Neurological Disorder, I considered myself to be an energetic, ambitious, resilient individual. It was my senior year of high school, and the majority of my classes were through the local community college. I was on the dean’s list with a 4.0 GPA, on track to be valedictorian, and a student leader implementing a classmate connection program for my early college program across the state with some of my closest friends. I had a rich social circle. I enjoyed hiking daily, and I was a powerlifter about to attend my first competition where I was on track to set state records.
After developing FND post-COVID infection, I failed my first classes, lost my valedictorian track, and had to step away from being a student leader. I lost my ability to walk any significant distance, let alone hike or lift weights, and watched my friends graduate before attending universities when I was forced to drop out. In the worst cases, friends accused me of intentionally faking disability in order to escape the responsibilities I once thrived on.
Becoming disabled happened abruptly. I became ill with the COVID-19 infection, and despite never being hospitalized, could not seem to catch my breath after recovering. A few months later, on my father’s birthday, I would be rushed to the ER after passing out and experiencing “strange” symptoms upon awakening. Over the next two weeks, I would return to the ER five times with increasingly severe symptoms until, eventually, experiencing my first functional/dissociative seizure (also known as a non-epileptic seizure). At the time, we had no clue what was going on and neither did the medical staff that saw me. Those experiences marked the start of a pattern of dismissals, false accusations, and medical gaslighting.
When I share that nearly every individual with FND has had experiences like mine, I do not say that lightly. Being bedridden, requiring help to eat, use the restroom, get dressed, go anywhere, all while attending countless appointments where we have to prove to providers what is happening is real: doubt about the neurological veracity of our symptoms are things we are forced to face on top of trying to find out what is medically wrong.
It took rejections/denials of care, and saying ‘nothing is medically wrong’ from every hospital in the pacific northwest, having personal information leaked to the local medical community, eventually leading to moving states in order to receive unbiased care in order to avoid being told my seizures, loss of ability to walk, chronic pain, chronic fatigue, and more was psychosomatic, a hypochondriac reaction. I was accused of drug seeking and told it was “just anxiety”. I would finally see an exceptional integrative neurologist who confirmed what I was feeling was real, not caused by stress and anxiety, and that things could improve.
Things would improve as I went through occupational therapy (paid out of pocket), specialised psychotherapy (paid out of pocket), physical therapy (partially paid out of pocket), acupuncture, OMT, chiropractic care, hypnosis, I even tried yoga. The results of the multidisciplinary treatments meant I mostly regained my ability to walk, though I require mobility aids (paid out of pocket). I have learned many ways to help manage my seizures, and take comfort in knowing they are real, as well as how to (mostly) prevent injury during them. Unfortunately, other FND patients like myself suffer significant roadblocks from insurance which continues to reject/deny coverage in addition to lack of understanding from the medical community.
Despite my symptoms improving, that doesn’t mean they are gone. They still significantly interfere with my life. I can’t work, can’t safely live alone, can’t drive, and largely depend on my family to help me in day to day life. I’m fortunate to have what I have, but still face limitations others are frequently shocked by. A disabled life is an expensive life, and we need all the help we can get. Unfortunately, many treatments are not covered by health insurance and HMOs. That means paying out of pocket, which most people do not have the means to do. I have had to cease many treatments due to cost in order to provide for my basic needs. Worse still, I frequently encounter people who feel the need to inform me that FND is a psychiatric disorder, “just anxiety”, and if I “try hard enough” things will go back to normal. This is incorrect and insensitive. Fortunately, more and more research is coming out proving just how real FND is. The National Institute of Neurological Disorders has a fantastic overview that reflects this.
However, the Social Security Administration still operates on outdated, offensive, incorrect information. It calls FND a somatic condition under section 12.07 of Mental Disorders, while using the inaccurate and pejorative term “Somatic symptoms and related disorders”. So, not only do we have to prove that we cannot work and face significant enough daily limitations to receive aid, we also have to spend all that effort using the very rhetoric thrown at us to justify a lack of need for care. This is unjust, traumatic, and far too commonplace to be accepted. FND is a rule-in disorder (meaning there are positive signs for its occurrence, as well as effective treatments) that is neurologically based. We are still learning more about it, but the very least we can do is treat it as it is: a debilitating neurologically based disorder that affects thousands of people in a variety of ways. There is currently no cure, but treatments can help, if only we are able to receive adequate resources for basic needs. For that to happen, we need to address this disorder as it actually is so it can reach the people who need it.
As I continue learning more and more about my condition and how to manage it, I dream of one day being able to live more independently, with more agency over my decisions, if not my body. This is made near impossible if I cannot work a full-time job, let alone drive to one, and paying for aids isn’t an option if money is only able to cover basic needs. I have applied for SSA, and my claim was denied because it was ‘not a neurological disorder’ but a ‘mental one.’ I refuse to receive aid only if I agree to comply with their offensive rhetoric, and know that each person who signs this petition makes a marked difference for positive change. Together, we can create change. Please sign this petition, so that thousands like me have a chance to create a life understanding that what we experience is real, and that there is hope.
Letter to Policymaker Template:
https://docs.google.com/document/d/1CDk4hVqFzhFWgXEa8RzvPqicB3ogq_ah-P6i8HWXHlo/edit?usp=sharing
Sources:
https://pmc.ncbi.nlm.nih.gov/articles/PMC8844274/
https://pmc.ncbi.nlm.nih.gov/articles/PMC7850207/
https://www.sciencedirect.com/science/article/pii/S187874792500090X
https://pubmed.ncbi.nlm.nih.gov/38674056/
https://www.ninds.nih.gov/health-information/disorders/functional-neurologic-disorder
Resources:
FND Hope
74
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Petition created on March 10, 2026