Our Creator’s Story with POTS

Hi! My name is Cassidy, and I am the creator of WomenWithPOTS. I am 17 years old, and I have Postural Orthostatic Tachycardia Syndrome (POTS). My story with POTS starts when I was 14. I am so lucky to have family who works in healthcare to be with me when I had my first episode. It was a terrifying experience, and I had no idea what was happening to my body. The first time I ever had an "episode"- which is what I call it- was in my own house. My sister found me on the floor unresponsive. I got rushed into the ER where they ran many tests. After many visits with doctors and cardiologists, about 6 months after my first episode is when I got diagnosed with POTS. My POTS is associated with my gastrointestinal (GI) issues as well. On the topic of my GI issues, I am diagnosed with IBS and excessive looping with redundancy of my intestines. I am very familiar with my body and all of the testing I have had, which I can go on and on.

POTS has been quite a journey for me. Going into my freshman year and having all new teachers who are unaware of this condition and what happens when I have an episode caused many issues throughout my time in high school. Going into my senior year I am able to reflect on all of these. I remember many of my episodes being dismissed as a "panic attack" or "anxiety attack". I am very aware when I will have an episode and usually, I am able to alert someone around me. The first time I passed out in school was one week into my freshman year, where I was put in a space and dismissed as having a panic attack. My teacher left the room with me alone. When I know, I am going to have an episode my ears start to ring, my vision starts to go away, then I can feel my body just turn into softness. I was in a chair when I passed out and my head fell to my chest. I was lucky to have a teacher in the connecting room that put me on the floor and tilted my head back and lifted my legs. They called the ambulance, fire department, the student resource officers, and all of our administration because my own teacher was unaware about what was occurring.

This ruined my integrity and many of my friends had questions and never seemed to understand. I was more than embarrassed; I was fearful for the next time and episode would happen. To preface this, my mother sends out an email on the day before school starts with all of my information about my conditions and how I handle them and how they can help. It is also in my student information when they take attendance it is easily accessible. From that point on I worked closely with certain administrators as well as my school nurse to create a safer environment for me and any other student who was struggling with anything similar. I like my integrity to be protected when it comes to this because from time to time, I do get embarrassed about this. Recently, going into my senior year of high school, I realized this isn't something I should be embarrassed of and instead I should raise awareness and help others implement POTS Protocol into their school.

POTS has had many moments, when I say many, I mean MANY, where I have been inhibited from many things. I have realized I can flourish in different ways now. Currently at my school I am a member of National Honor Society, Science National Honor Society, Spanish National Honor Society, and many other clubs my school offers. As well as President of Health Occupations Students of America where I placed first regionally, third in the state, and top 18 globally in phlebotomy. I am also president of Women in STEM and Engineering club vice president. With being an International Baccalaureate student, having POTS slowed me down a lot and there have been times where I have gotten behind and very overwhelmed. In those moments, I was mad at myself. I realized that this is out of my control and all I can do is follow my medication schedule and try my best. I want every teenager in school, as well as adults, to feel safe when they have an episode rather than this chronic condition being a burden to them. My story is evolving in a positive way with POTS, and I would love to share even more details with everyone. Please feel free to reach out to me if you would want to share your story!

Let’s change the face of POTS starting with us teenagers taking charge!

- Cassidy Owens

Creator of WomenWithPOTS