POTS Strong

By Micaela Boucher

My name is Micaela and I am a 22-year-old recent graduate from the University of Wisconsin - Green Bay.

I began participating in pageantry 12 years ago as a shy, insecure girl who didn’t know how to use her voice. Growing up, things weren’t the easiest for me. I didn’t come from wealth, preparing for upcoming pageants was arduous. The majority of my time was spent fundraising and finding local sponsors, shopping second hand, and researching videos on how to win instead of working 1-on-1 with a coach.

Life at home was stressful. My parents were in and out of the hospital, battling cancer, having joint replacements, facing complications such as staphylococcus infections, pulmonary embolisms, and aneurysms. Alcohol was their coping mechanism, and it almost tore my family apart. I would fall asleep at night wondering if my parents would still be alive when I woke up the next morning. I was terrified. Due to my given circumstances, any health concerns I experienced myself were put on pause.

Pageantry helped me to develop the communication skills and confidence I needed to begin advocating for myself. Once I turned 18, I began seeking help for my symptoms. My first diagnosis? Generalized Anxiety Disorder and Depression.

This diagnosis was no surprise to me, as I had been struggling with my mental health for years in silence while my parents fought for their lives. However, while this diagnosis holds true, it has made the diagnosis of my other symptoms much more challenging to resolve. It even took me over a year and a half and seeking consult from 4 different doctors to receive my combined type Attention Deficit Hyperactivity Disorder (ADHD) diagnosis at 19-years-old.

My greatest battle was fought receiving my Postural Orthostatic Tachycardia Syndrome (POTS) diagnosis. My sophomore year of high school, Covid struck. After recovering from falling ill with the virus myself, I began to notice peculiar symptoms and changes in my life. At just 16-years-old, every time I stood up my world would turn black. My vision would fade to darkness, my hearing would  buzz while tinnitus and the sound of my heartbeat rang throughout my head, a wave of heat, cold sweats, and pins and needles swarmed my body, my heart palpitating as it felt like it was trying to jump out of my chest, and the weight of my body became heavier as each second passed. After a few painful moments, each of my senses would return as if nothing ever happened. I would experience these episodes during cross country and track practice, in the extreme heat of Wisconsin summers, or even from standing in one place for too long. Chronic fatigue, pain, weakness, and bowel changes plagued my every day life. How could a perfectly normal, healthy 16-year-old athlete suddenly experience such symptoms?

For 4 years my symptoms would be dismissed by everyone around me. I was told I “stood up too fast, needed to drink more water, it was just my anxiety, etc.” My first trip to the emergency room, the doctor working refused to perform any tests and said my symptoms were “all in my head.” 59% of POTS patients are told this. Ignoring that my resting heart rate was sitting at 149 bpm, I was prescribed an antacid for acid reflux and sent on my way. It was all because of the nurse who treated me that I decided to look into POTS. I followed up with my primary care physician and was placed on a halter monitor for a month. Upon results, I was referred to an electrophysiologist where I was later tilt table tested, finally receiving my diagnosis after 4 painstaking years.

94% of POTS patients are women of childbearing age, with an estimated 3-6 million Americans having the disorder. 75% of those patients have or will receive a late diagnosis due to the dismissal of the condition. This needs to change, because this disorder is NOT “all in our heads.”

I’ve made it my mission to continue using the communication skills pageantry instilled in me to break the stigma surrounding POTS, and to encourage individuals to advocate for themselves to be strong in the pursuit of answers regarding any healthcare diagnoses needed to reclaim their lives. Self-advocacy is an essential skill necessary for all areas of life. If you notice something is wrong, it is imperative to speak up and have confidence in yourself to achieve the goal you have set. To accomplish this mission, I created POTS Strong: Reclaiming Lives Through Strength & Advocacy to not only bring awareness to POTS, but to instill self-advocacy skills in my online audience.

If it weren’t for pageantry’s impact on my life, I wouldn’t have the answers I have today nor the passion to create change.

----

Micaela Boucher POTS Strong: Reclaiming Lives Through Strength and Advocacy. You can find POTS Strong on Instagram.

This is her first guest blog for Section 36 Forevers.