My Reality of Living With POTS

June 14th, 2017. I’m sitting at a flea market, and I can’t breathe. My pulse is going, my head is spinning, I’m fiddling with my hands, trying not to panic. My friends asked me if I was OK, and after insisting for two hours that I was fine, I realized I wasn’t. Next thing I knew, there was a crowd of people around me. I was crying into my friend’s shoulder. Through my sobs, I heard the words “ambulance” and “hospital.” Then I was in my dad’s truck, on my way to the emergency room. Arriving there, I was abruptly carried out of the truck and put in a wheelchair. They had me back and in an exam room in a matter of seconds, hooked up to an EKG machine. After calming down, and my symptoms slowly fading, the doctor came in. She took one look at me and said, “You probably had an anxiety attack, you’re fine.”

After talking with the doctor a bit, I was taken back to the flea market, too weak to walk on my own. My dad insisted I had something to eat, so I tried a hot dog. During eating, I was having trouble breathing. I was confused, and realized that I wasn’t OK.

Since that day, I have been struggling with the life-altering effects of postural orthostatic tachycardia syndrome (POTS). I received my diagnosis on December 15th, 2017. Before then, I had been to the emergency room eight times. I had visited two different cardiologists, a pulmonologist, a gastroenterologist, and a pediatrician. First, it was anxiety. Then, it was the result of trauma from my previous appendectomy in May of 2017. Then, it was gastritis, and back to anxiety. I knew it wasn’t.

I missed 14.5 days of school between August 21st and October 26th. October 26th was my last day of school, before I was pulled out and put into a homebound program because I was leaving school early almost every day, or simply wasn’t attending due to symptoms. I have multiple episodes every day. The trouble breathing, immense chest pain, abdominal pain, headaches, ear ringing, brain fog, confusion, fatigue and weakness, skyrocketing pulse, vision problems, nausea and vomiting, and the fainting leaves me in a debilitating state of not being able to walk on my own, and needing my mom to help me get back to the bathroom.

Having an episode in the middle of a store. Getting strange looks from people because you have to sit down on the floor, or you have to stop walking and being exhausted after walking for only a short time. Clutching your chest, and doubling over in pain, crying in public because you can no longer hold in how much pain you’re in. Not being able to go places and do the things you want. Missing out on hanging out with friends. Not being able to stand for longer than 10 minutes without your blood pressure dropping and your heart rate skyrocketing. Not being able to get through an entire meal without stopping because you can’t breathe. Not sleeping at night because you slept all day and your brain won’t shut off. Taking your third nap of the day and waking up extremely tired because you don’t have the energy that a once active 14 year old girl should. Having to leave stores and go outside because you’re overheating and you feel like you’re not getting enough oxygen.

This is my reality, and the reality of so many others with POTS. You are not alone. Don’t let doctors tell you that you have anxiety. Be your own advocate. Talk to people, find someone who knows what you’re going through. Ask questions, don’t let people tell you that you aren’t sick. Suggest medications, suggest seeing different doctors. If you don’t feel comfortable with a doctor, or they don’t believe you, find a different doctor. Chronic illness is real. It isn’t necessarily your forever. Don’t spend your days thinking, “How will I live my life in this condition?” Spend your days concentrating on how you will overcome this condition. You are not your illness, you are so much more. Take your medicine, keep hydrated, and stay positive throughout this journey. POTS is a dark tunnel, but your support system is there to light the way.

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Getty image by ArminStautBerlin

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