“There’s always a silver lining, you just have to find it.” – Patient Journey of living with FND

“Even before having functional neurological disorder (FND), I was no stranger to chronic illness. I had already been suffering from severe chronic inflammation since 2017 with little treatment success. Despite my “experience” the morning my FND set in was traumatizing. My husband and I had just gotten back from a vacation to Amsterdam, and I knew I would have a flare-up the week we returned. By the following Monday I was feeling well rested and ready to continue my job. The next day I woke up not being able to walk or dress myself. To have everything in my life change overnight was more difficult than I can express, emotionally and physically. It then took four months to get referred to the movement neuro specialist who would diagnose my involuntary movements and the weakness that spread throughout my body.

When I began physical and occupational therapy, I was barely able to walk and had extreme difficulty getting my body to do simple movements using opposite limbs. Shortly thereafter I started having difficulty swallowing causing severe weight loss. The combination of inflammation and FND make for a rather delicate balance to not to cause any flares while still trying to re-train my brain.

Over the past year we have seen some ups and downs with changes in treatment. We’ve found many adaptive tools and techniques to help with daily activities. While I still struggle in areas and know my life will never be the same, it’s still incredibly improved from where I was a year ago. The most recent decline proved difficult, I’m still working hard to get back to my best, which was around October, when I could perform dance routines and make cosplays for competitions around the state.

I’ve learned to pace myself so I can use my recovered skills to continue doing the things I love, even if I must do less and work more slowly. Now I’m able to start dancing again, sew my own clothes, and make content for my various social media accounts. I’ve been able to travel again, and we are even working to compete for an international cosplay qualifier this year. Things looked bleak and sometimes still do, but there is always a way to adapt and overcome. In a way, my FND journey has been good for me. Not being able to work is unfortunate, but my quality of life has improved because I’m able to do things at the pace my body needs. It also means I can focus on the content creation, and my craft business I always wanted. There’s always a silver lining, you just have to find it.” – Ariana, RWW Patient