"Nobody understands my new reality. POTS has disabled me" Lily's journey with POTS (Postural Orthostatic Tachycardia Syndrome) and navigating the healthcare system.

Nobody understands my new reality. POTS has disabled me. 

My name is Lily. . I have had symptoms of Dysautonomia my whole life. Dizziness, vision going black and trouble breathing after walking up stairs at school, what I now know has been pre - syncope episodes but back then was told I just wasn’t eating enough, chest pain, nausea, vomiting, intense sweating just to name a few. Everything had been written off as anxiety my whole life. I do have mental disorders I inherited from my father, but I always knew these symptoms weren’t anxiety related. A racing heart and drenched in sweat without any feeling of panic. Blurry vision and constant head aches. All these things have been happening to me truthfully since I can remember. Eventually after advocating for myself for a very long time I found a primary care who listened. she sent me to a pulmonologist who told me I just had asthma and that an inhaler would help (surprise, it didn’t). I graduated high school and went to trade school to become a Certified Nurse Assistant. Finally after graduating the program I got my dream job as a CNA making $20 an hour as a freshly 19 year old. One day at work after helping a resident take their shower, I fainted. this is the first time I had ever fainted. An ambulance was called and I was taken to my local ER where surprise surprise they said it was a panic attack. I knew it wasn’t that, so I went home and did my own research and discovered something called POTS. I researched extensively and every single symptom aligned with me. I got referred to a electrophysiologist who tested me and diagnosed me with POTS. I’ve been diagnosed for 1 year and through out that time I have slowly become disabled by POTS. I use mobility aides now and can no longer have an in person job due to the fact that I faint so often and have so many other debilitating symptoms. My hope by sharing my story is that people will become more educated on POTS / Dysautonomia and that medical professionals will educate themselves on it as well and stop just slapping the word “anxiety” on things they can’t seem to figure out. I am a very medically complex patient and so so often I get pushed to the side when medications don’t work. I and other complex patients don’t deserve to just be pushed aside and forgotten about just because doctors struggle to know how to help us. 

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