Thriving While Disabled with FND
State: New Jersey
Congressional District: NJ06
Migraine, Neurological Disease
Issues and Challenges
Alison has encountered: Access to Expert Providers, Copay Issues, Rare / Underserved Disease, Abuse (Mental, Physical, Elder), Caregiving, Disability, Invisible Illness, Social Security Disability
I was diagnosed with depression at the age of 9 and had minor learning disabilities recognized even earlier. While in college, I dated a man who became emotionally abusive, and that's when my Functional Neurological Disorder (FND) became obvious. At the time, I didn't know what was wrong, just that when I was with him, I'd shake - my whole body moving like an exaggerated shiver.
After we broke up, things got worse. I only felt safe if I knew that he didn't know where I was. I started having what I now know to describe as myoclonic jerks, but at the time could only really describe as "twitches". It took three years to get the diagnosis of “Conversion Disorder”, which is now known as FND.
While researchers are still struggling to understand FND, at its most basic it appears to be a miswiring in the brain in response to trauma, which can cause any number of neurological symptoms, with each patient having a somewhat unique set of symptoms. My strongest and most obvious symptoms are movement symptoms, which at this point can impact pretty much any muscle set in my body. Sometimes it's myoclonic jerks, other times, it's tonic-clonic movements. I also am managing urinary urgency and some sensory symptoms (my brain appears to have decided that my left leg doesn't have its peroneus muscles).
I spent just over a year during and after college in a state of remission (having been assured by my neurologist that everything was just the result of anxiety), then upon learning that a new position I had started working had lost funding, I experienced a relapse. It was during my relapse that I was finally correctly diagnosed. I had to see two more neurologists and a few more psychiatrists before I found a movement disorder specialist who was able to correctly identify my condition.
FND is actually the second most common reason people go to neurologists in the first place (the only more common issue is headaches/migraine, which I also have). I kept being unable to work due to the severity of my movement symptoms and I applied for SSDI in 2004, about a year after my FND symptoms re-emerged. I rethought my career choices and selected a new field, rebooting my life. I tried working again, but learned that working more than part time simply wouldn't work for me in the longer term, since my symptoms are extremely stress responsive. I took on multiple part time jobs with my SSDI income as my primary support, and eventually created my own little consulting business.
Through all of this, my FND symptoms waxed and waned with the severity of my life stress level. I eventually decided to go to graduate school, and successfully completed my master's degree in Organizational Change Management in 2015, five years after I started the normally two-year program. At the end of the first year, my partner was in a car accident and experienced a mild Traumatic Brain Injury. I managed his care, helping him through a variety of symptoms. After about a year of treatment, he was left with a constant moderate headache, but few other symptoms. The stress impacted my studies, leading to ‘incompletes’ in multiple courses, and likely prompting the symptom shift that kept me from returning for a year. When I finally graduated, my FND symptoms were severe enough that I couldn't safely climb stairs for fear of my legs collapsing without warning.
A few months after graduation, I learned of a treatment program for FND, out of Louisville, Kentucky, about 1/3 of the way across the country from where I live in New Jersey. I decided it was worth the effort, and was between neurologists at the time, so I reached out on my own and asked for an assessment. My partner drove us down there for me to be evaluated for the program, and they agreed that I was a good candidate. Two months later, I flew down for a week-long hospital stay, and emerged in better shape than I'd been in in years. I had much better control over my movement symptoms, though I had developed new sensory symptoms and some bladder control issues.
It was worth it.
Enjoying my newfound freedom, I debated driving again while celebrating my ability to walk normally without needing a distraction, safely use stairs again without fear, and generally get by with minimal movement symptoms.
Five months later, as I was applying for jobs again, my partner slipped and shattered his acetabulum. The next year was spent searching for the underlying cause of that break and making sure that he healed properly.
The new trauma of his injury triggered my FND symptoms again, though I still was in better shape than I'd been in before participating in the treatment program. I got my partner into the Hospital for Special Surgery for his hip reconstruction, then found him the right physical therapist and eventually got his bone density checked. He had osteoporosis, which his second endocrinologist eventually recognized as likely caused by pernicious anemia. My partner watched me advocate for him every step of the way and was able to appreciate the work I had done both for myself and for him over the years.
As he healed and I regained control, I started thinking again about work and what kind of work would make sense for me. My partner pointed out my skills and knowledgebase in the various broken systems that we were participating in, and so I created Thriving While Disabled, my blog and coaching business, where I help other disabled folks to create their best possible lives through navigating our broken social welfare, social security, healthcare, and medical care systems.
My goal is to help others get through these intricate processes with their mental health intact, which isn't always easy. Setting my own hours and schedule gives me the freedom I need to safely run my business, with the flexibility to work as much as I want when my life stresses are low, and as little as I need to when life stresses are high. I love the work I do, and hope that if you're struggling you'll reach out. We all deserve to be happy, and I love helping others find hope and strength again as they face down some of the more difficult challenges life can serve up.
My Motivation and Inspiration
I have always been a very motivated person who wants to give back to my community, and who wants to connect with others. I'm struggling with a condition that responds to any strong emotion by causing movement symptoms.
I manage my FND symptoms through meditation, mindfulness, and doing my best to create a reliable steady structure on which to rest my life.
I'm enjoying the process of developing and growing Thriving While Disabled as part of my own healing process and a way to give back to the disabled community by sharing my hard-earned lessons in a context that makes sense and pays me for doing so.
My partner remains supportive and is excellent at holding up a mirror to me and reflecting back just how unique and useful my skillset is, since I have a tendency to take myself for granted.
I don't expect to ever completely recover from my FND, but I do plan on building myself the best life I can while managing it.