Maddie

My symptoms first appeared at 16. I remember this as I experienced a scary period of prolonged tachycardia, that led to my first hospital visit. Although I experienced symptoms from there on, they escalated significantly at age 20. This is when the fatigue and loss of consciousness finally became impossible to ignore.

How long did it take you to be diagnosed? It took 4 years (which, surprisingly, is quicker than average). I had to go from being an active young woman, who was part of a cheerleading team and danced, to losing consciousness and being forced to leave my job due to my health, before anyone would look past my “mental health history”.

The Story I was 16, when I first attended hospital with a heart rate that simply wouldn’t come down. Instead of investigating my heart, the doctors focused on my identity. Being autistic and having a history of anxiety and depression meant I was immediately stereotyped. I was asked if I had taken drugs that day (I don’t have a history of this), and when those tests came back negative, my symptoms were simply dismissed as “autistic anxiety”.

A cardiologist told me I was “young and healthy” and sent me away. I spent the next few years trying to push through. By 20, I was working in a high-pressure nursery job. I was constantly ill, my doctor now suspects PoTS may have been worsened by a virus I caught and never fully recovered from. Eventually, my body reached its limit. I began collapsing, suffering from extreme tachycardia and debilitating fatigue. I had to leave the job I loved because I could no longer function, I was no longer safe to take care of young children on my own.

It was only after I lost consciousness and was referred back to cardiology for a five-day Holter monitor and a stand test that I finally got my answer: it was PoTS all along.

How has PoTS affected your life? It feels like my old life was stolen. I used to be a cheerleader and a tap dancer; I was always on the move. Now, I experience fatigue that makes just getting out of bed feel like I’ve run a marathon. Leaving my career at the nursery was heartbreaking.

However, I’ve recently started sharing my journey on social media. It has been a surprisingly positive experience. Connecting with others who have had their physical symptoms dismissed as “neurodivergent anxiety” has helped me feel less alone and given me a new sense of purpose.

What is the biggest challenge? The “Diagnostic Overshadowing”. Being autistic shouldn’t mean your physical pain is invisible but for a lot of us we are neglected medically. The assumption that my racing heart was just a “panic attack” delayed my diagnosis by years and allowed my condition to worsen to the point of collapse.

What would you like to say to someone who knows nothing about PoTS? It is not just a fast heart rate, it is a multi-systemic syndrome that affects every aspect of your life. It’s not just “getting dizzy when you stand up” it’s a total switch of how you exist in the world. PoTs patients are strong.

What is your biggest hope in terms of PoTS and raising awareness? I hope for a medical world where “autistic” isn’t a reason to stop looking for a physical diagnosis. I want doctors to understand that we can be anxious because our hearts are racing, not the other way around.

Do you have any wise words/messages of hope? Do not let them tell you it’s all in your head. You know the difference between a racing mind and a racing heart. Keep pushing until you find the person who actually picks up the stethoscope.