Sarah’s Journey with POTS

Ms. Puff and Misha!

Hi! My name is Sarah. I’m currently in university studying environmental science. I’m passionate about sustainability, spending time outside, and teaching adaptive dance—it’s one of my greatest joys! Alongside those passions, I live with Postural Orthostatic Tachycardia Syndrome (POTS). I’ve had symptoms for about three years, since my first COVID infection in 2022, but wasn’t officially diagnosed until November 2024. Here’s a look into my life!

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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?

Sarah’s Answer: I miss cheerleading the most. I cheered throughout high school and my first year of university—it was such a joyful and empowering part of my life. But after my POTS symptoms began, it became impossible. I would faint, throw up, and feel terrible after practices. I also really miss being able to travel freely—walking around new places without worrying about accessibility or crashing from symptoms. I used to feel energetic and adventurous, but now even getting out of bed can be a challenge.

Question: What are the main symptoms you experience?

Sarah’s Answer: My symptoms include nausea, fatigue, brain fog, abdominal pain, fainting and pre-syncope, headaches, vision issues, joint pain, nerve pain, dizziness, hot flashes, and temperature sensitivity. It’s a long list, and unfortunately, they tend to pile up all at once.

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

Sarah’s Answer: Being in university with POTS means missing classes for appointments or flare days, and navigating campus can be difficult when I’m not feeling well. It’s also tough to find work that won’t trigger symptoms, since most part-time jobs near my school involve some form of physical labor.

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

Sarah’s Answer: The hardest part is that people often don’t believe me because I “look fine.” POTS is invisible, and being young makes it even harder to be taken seriously. For a long time, doctors dismissed my symptoms as period-related or anxiety. It took persistence and finding a provider who would actually run an orthostatic test to finally get a diagnosis. Not being believed is incredibly discouraging and isolating.

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

Sarah’s Answer: Getting on the right medication has been life-changing. I also bring someone with me to appointments now, which helps doctors take things more seriously. Just having someone advocate for me makes a huge difference in how I’m treated and what care I receive.

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

Sarah’s Answer: The best support comes from people who meet me where I’m at—friends who are okay with low-energy hangouts, FaceTiming when I’m stuck in bed, or offering salty snacks because they know it helps. But the most important thing is when people truly believe me. Validation and understanding go a long way when you’re dealing with an invisible illness.

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

Sarah’s Answer: That young people can have chronic health conditions—and that they are very real, even if you can’t see them. You can’t judge someone’s health based on what they look like. We deserve to be heard and treated with respect

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