Amanda’s life with FND, POTS, and Gastroparesis

Hi! My name is Amanda George. I’m 18 years old, and I regularly play guitar at open mic nights in my town. Music has always been a huge part of my life, and performing gives me an outlet to express myself beyond the challenges of chronic illness. I have Functional Neurological Disorder (FND), Postural Orthostatic Tachycardia Syndrome (POTS), and Gastroparesis, which I’ve been living with for four, two, and one year(s), respectively. Here’s a little insight into my life with chronic illness.

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Question: If you were not born with your condition, what do you miss the most from before you had it? What do you grieve from prior? What’s one thing you were able to do before that you are unable to do now? Amanda’s Answer: I miss being able to go out with friends without having to plan everything beforehand. Now, it’s hard to do anything or go anywhere without making arrangements in advance. Spontaneity used to be something I never thought twice about, but now it takes energy and preparation to even consider leaving the house.

Question: What are the main symptoms you experience?

Amanda’s Answer: I experience nausea, fatigue, brain fog, abdominal pain, fainting, and pre-syncope, which can make everyday tasks difficult. I also struggle with headaches, vision issues, joint pain, nerve pain, and dizziness. On top of that, my Functional Neurological Disorder causes seizures and cataplexy, which can be unpredictable and add an extra layer of difficulty to navigating daily life.

Question: How does your condition affect your daily life and school?

Amanda’s Answer: I miss a lot of school because of constant doctor’s appointments and long hospitalizations. I missed so much of my junior year that I had to repeat it, which was a difficult adjustment. Even on days when I do make it to school, I often don’t make it through the whole day without needing to go home early. It’s frustrating to feel like I’m always falling behind, no matter how hard I try to keep up.

Question: What are the toughest parts about living with this condition? Be as specific as possible!

Amanda’s Answer: The toughest part is the hospital stays. At this point, I’ve grown accustomed to them, but that doesn’t make them any less draining, both physically and mentally. Living with Functional Neurological Disorder is especially difficult because of the fear of having a seizure or cataplexy attack in public. It makes me feel like I have to "hide" or be extra cautious, which can be really isolating.

Question: What tips or strategies have helped you manage your condition?

Amanda’s Answer: Building a strong support system has been one of the most important things for me. At first, I was embarrassed to talk about my condition with anyone besides my doctors, but over time, I’ve found a group of friends who genuinely care and want to learn about what I go through. Having people who understand and support me has made a huge difference.

Question: What kind of support (from friends, family, or others) has been most helpful?

Amanda’s Answer: When my friends visit me in the hospital, it makes me feel so loved and cared for. After years of medical gaslighting and having doctors dismiss my symptoms, it means everything to have people in my life who truly believe me and help me advocate for myself.

Question: What’s one thing you wish people understood about living with a chronic condition?

Amanda’s Answer: Just because you have a chronic illness doesn’t mean you can’t do the things you love. Some days are harder than others, but that doesn’t mean you can’t enjoy life. It’s all about adapting and finding ways to make things work, even if it looks a little different than before.

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