Advocation and Acceptance

During COVID lockdown, I ended up getting it. About 2 months later, I started experiencing dizziness, fatigue, and nausea. I did not know what POTS was until 2 years ago. That was then I started going to doctors and the immediate responses were ‘It’s just anxiety’ or ‘Sometimes when young girls are on their period they may experience…’. All of these doctors were dismissing my concerns and never did any tests. When I was 14, I went to the Emergency Room for heart palpitations and again it was ‘just anxiety’. 

I went to a local physician and explained that I was very positive I had POTS, he said ‘anxiety’ and my mother asked for a referral to a cardiac specialist. He immediately validated my concerns and did a simple blood pressure test to confirm I did indeed have POTS. This then lead to genetic testing for possible Marfan’s Syndrome (negative) so I was tested for different genetic Ehlers Danlos Syndromes, they came back negative as well. It was determined that I have the nongenetic form: hypermobile EDS or hEDS. 

Both POTS and hypermobile EDS are invisible yet debilitating. Many people do not understand the toll invisible conditions take on people. I hope to inspire people to advocate for themselves and to never let their condition(s) define how they choose to live or how others view them. 

I manage my symptoms with a variety of items like heating pads, ice packs, compression garments, and salt. My first symptom was dizziness, my worst include nausea, fainting, temperature regulation issues, and air hunger or hyperventilation. After my diagnosis, many people were forced to accept that I was chronically ill and that I wasn’t ‘just lazy’ or ‘stubborn’, that I was in fact not lying or over-exaggerating. If this story teaches you anything, it should be that no one knows you or your own body better than you and your body.