Izzy’s Journey with POTS, PNES, and Ehlers-Danlos’s Syndrome

Hi! My name is Izzy. I’m someone who loves to stay active, and I used to spend a lot of time at the gym, playing with my three dogs, and going to rodeos. However, life hasn’t been quite the same since I was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) three years ago, as well as Non-Epileptic Seizures (PNES) for the past six months, and Ehlers-Danlos Syndrome (EDS). Living with these chronic conditions has altered my daily life in ways I never imagined, but I’ve learned to adapt and push forward. Here’s a glimpse 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?

Izzy’s Answer: Before I developed these conditions, I could play sports without having to worry about whether I’d faint or have a seizure. I miss being able to go out with my friends and not constantly having to check in with myself, wondering how I’m feeling or whether I’m able to push through. I used to be able to do things on a whim without considering my health—things like going to school or hanging out with friends were easy and spontaneous. Now, I have to think about how my body will react and whether I’m physically up to it. It's a big change, and I grieve the loss of that freedom.

Question: What are the main symptoms you experience?

Izzy’s Answer: I experience a variety of symptoms, including nausea, extreme fatigue, brain fog, abdominal pain, fainting and pre-syncope, headaches, vision issues, joint pain, nerve pain, and dizziness. On top of these, I also experience seizures, which are a huge challenge. Managing these symptoms on a daily basis is exhausting, and it’s hard to predict how I’ll feel from one moment to the next.

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

Izzy’s Answer: My condition has completely changed the way I approach my day-to-day life. I am no longer able to attend school in person, and I’ve had to switch to homeschooling. It’s been really isolating not being able to see my friends or engage with others at school. I’ve also had to miss out on a lot of things that I used to enjoy, like going to social events or participating in activities. My life revolves around managing my symptoms, and it feels like I’m constantly trying to figure out how to balance rest and activity.

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

Izzy’s Answer: The toughest part is definitely dealing with the flare-ups and constant symptoms. On some days, it feels like I’m fighting my own body, and it’s really frustrating not knowing how I’ll feel from one moment to the next. There’s also a lot of uncertainty about what I can and can’t do—one day I might feel okay, and the next I can barely get out of bed. It’s emotionally draining, especially when it feels like my body is constantly betraying me.

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

Izzy’s Answer: One of the biggest strategies that’s helped me manage my condition is staying active within my limits. I still go to the gym and do what I can, but I’ve had to learn to listen to my body and take rest days when needed. Pacing myself is key—knowing when to rest and when to push myself a little is something I’ve had to get better at. I also monitor how I’m feeling throughout the day, checking in with myself so I don’t overdo it.

Question: What kind of support (from friends, family, or others) has been most helpful? Izzy’s Answer: My family has been my biggest support system. They’ve been there for me in ways that I never expected, and it’s comforting to know they have my back no matter what. They’ve helped me navigate the ups and downs of my condition and have been so understanding when I need to rest or cancel plans. It’s been really helpful knowing I have a solid support system in place that I can rely on.

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

Izzy’s Answer: One thing I wish people understood is that we don’t get to choose when we have bad days or when we physically can’t get out of bed. It’s not about “faking it” or trying to get attention—it’s about the reality of living with a chronic condition that can flare up at any time. It’s frustrating when others don’t see the struggle or think that we’re just being lazy. We are doing our best, and sometimes that’s all we can do.

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