June 22, 2018. That day will always be an defining one for me. On that day, I was diagnosed with Postural Orthostatic Tachycardia Syndrome, or POTS for short.
For years I have experienced tremors, anxiety, rapid heart beat, lightheadedness, and extreme exhaustion. While none of this was fun, I always contributed it to my mental health and focused on that. I never thought of it as physical.
That is until my blood pressure became a critical issue. It had been high for years, but to a certain degree anxiety can explain that. It wasn’t until my diastolic pressure was consistently above 100 that I started to consider that maybe something else was at play.
I went to a pediatric nephrologist, who simply dismissed me by saying, “I know how sick looks, you don’t look sick.” A year later, when I began seeing a new general practitioner she noticed my blood pressure and started me on a medication for it. I came in every few months to check in, but it was clear the medication wasn’t making a difference.
She then referred me to an adult nephrologist, who ordered a series of tests including a tilt table test. This is considered the gold standard of tests for POTS, so although I’m not a fan of hospitals or IVs I was looking forward to it. Looking forward to getting answers. But apparently a lot of times they aren’t performed correctly, and in my case it came back as inconclusive. I came close to having answers. But yet again, we were left with no diagnosis.
So I was referred to a third nephrologist. And guys, the third time really is the charm! Within minutes of meeting me, the doctor was able to look me in the eyes and give me a diagnosis. Furthermore he was able to explain the illness to my mother and I.
Here is my very elementary explanation… POTS causes blood to pool in your legs. Because of this, your heart struggles to pump enough blood elsewhere, including your head. When standing, this is exacerbated. Many times this causes people to feel dizzy, or pass out. It also causes tachycardia, which is a fast heart rate, and in my case hypertension.
I am living with POTS. I have a chronic illness. POTS is a form of dysautonomia that affects millions, and I encourage everyone to learn more about it. (I have placed a link below.) I was lucky enough to learn my diagnosis in under 2 years, while the average time it takes to be diagnosed with POTS is 6 years. This is an invisible illness, but it is an illness. 25% of people with POTS aren’t able to work because of the severity of it. So I encourage everyone to be informed, and remember you never know what someone else is going through.