Real Stories, Real Strength: Living with POTS and Building Community

Behind every statistic about Postural Orthostatic Tachycardia Syndrome (POTS) is a person navigating the complexities of daily life while showing remarkable strength. People with POTS experience symptoms such as dizziness, fatigue, rapid heartbeat, and fainting, yet many continue to show up for work, school, and family despite the challenges. What may look invisible from the outside is a daily balancing act that requires persistence, courage, and hope. These lived experiences remind us that POTS is not just a medical condition—it is a community of individuals whose resilience inspires connection and empathy.

For many patients, the journey to diagnosis takes years. During that time, they endure countless medical visits, multiple misdiagnoses, and the emotional toll of not being believed. Yet, the persistence to keep searching for answers is a testament to resilience. Real stories bring this reality to life, showing that strength is not the absence of struggle but the determination to keep going. By sharing their experiences, patients help others feel validated, less alone, and more empowered to continue their own journeys.

Community grows stronger when voices are heard. Sharing lived experiences of POTS not only humanizes the condition but also normalizes conversations about invisible illness. Each story expands awareness, builds empathy, and connects people who may otherwise feel isolated. Real voices demonstrate that while POTS is underrecognized, it is far from rare. Millions live with these symptoms, and their courage in speaking up paves the way for earlier recognition and better care for others.

One story that captures the resilience and creativity within this community is that of Nichole from Philadelphia, PA.

My name is Nichole, and I’m from Philadelphia, PA. I developed POTS very suddenly, and my life has never been the same since. In July 2019, I drove across the country from California to Philadelphia. At the time, I was also taking Junel FE. A few days after the trip, I developed sudden, severe, cardiopulmonary symptoms. After visiting five emergency rooms in just ten days and being refused a CT scan at each one, a pulmonary embolism was finally diagnosed and treated. However, I left the hospital and never felt “better” again. My heart rate soared into the 180s just from standing up to brush my teeth. Doctors were quick to realize I had POTS. For almost two years, I was mostly confined to the couch, only able to walk a few feet at a time.

During that period, I saw countless doctors, specialists, and autonomic clinics. It wasn’t until the spring of 2021 that I finally found the right doctor and treatment plan for me. By the summer, I was able to walk more freely and live with greater comfort. I wasn’t back to my old self, but at least I could function again.

I knew what it was like to spend endless days stuck on the couch unable to do anything. I also realized that nothing existed online to bring comfort or joy specifically to people with POTS. When someone once gifted me a FabFitFun box as a “get well soon” present, I thought: How wonderful would it be if something like this existed for people with POTS? That thought planted the seed for what I eventually created.

In 2023, I launched So You Have POTS, a company that offers seasonal subscription boxes and care packages designed especially for people living with POTS. I also create starter packs, mini hydration packs, and a few autoimmune disease care boxes. Each one is custom-tailored to an individual’s symptoms, needs, likes, dislikes, allergies, and sensitivities.

My journey from being bedridden to slowly rebuilding my life taught me how much small comforts matter. So You Have POTS is my way of turning struggle into purpose—and giving others the kind of support I once needed too. Real stories change perceptions: they show that POTS is invisible but very real. Community voices build empathy and remind us of the strength within this community.

Nichole’s story demonstrates the strength and creativity that can grow out of hardship. Her journey from being bedridden to building something that uplifts others reflects the resilience of the broader POTS community. These stories not only humanize the condition but also create practical solutions that bring joy and comfort to others facing the same challenges.

The collective strength of people with POTS is found in their willingness to keep going, even when the path is unclear. It shines through when someone uses their experience to advocate, educate, or create resources for others. Every story shared is a reminder that resilience is not about being unaffected by difficulty but about adapting, enduring, and finding ways to thrive despite it.

As a community, sharing these real stories strengthens identity and reduces isolation. Whether through blogs, social media posts, or conversations with friends, each voice carries weight. Together, these stories become a powerful chorus that drives awareness, builds understanding, and fosters connection. They also inspire action, reminding us all that even in the face of invisible illness, resilience is possible.

Real stories of POTS are stories of real strength. They remind us that patients are more than statistics—they are individuals navigating challenges with persistence and grace. By amplifying these voices, we build a stronger, more visible community where no one feels invisible, and where every act of resilience is celebrated.