It has been two years since I heard the word “dysautonomia” for the first time. When my mom and I went to a cardiologist to see if we could get to the bottom of my fainting spells, I had no idea I would leave with a diagnosis that would change my life forever.
It just so happened that the cardiologist I went to see that day had previously worked at The Mayo Clinic, which is one of the leaders in autonomic dysfunction and dysautonomia. She instantly knew I had a form of dysautonomia known as postural orthostatic tachycardia syndrome, or POTS for short. I was one of the lucky ones since the average diagnosis time is almost six years.
According to Dysautonomia International, dysautonomia is “an umbrella term used to describe several different medical conditions that cause a malfunction to the autonomic nervous system.” Postural orthostatic tachycardia syndrome is one of the conditions that fall under the umbrella term dysautonomia. It can cause a wide variety of debilitating symptoms including fainting, dangerously low blood pressure, tachycardia, dizziness, nausea, vomiting, vertigo and brain fog, just to name a few. Yes, I’ve found it to be as awful as it sounds.
We have tried almost every medication, lifestyle change and home remedy to try to control my POTS. I now live with an IV port in my chest so I can give myself infusions four times a week. While it has helped tremendously, many people do not understand the reality of POTS and invisible illness in general. Symptom management is not a cure. Each day is still a battle I fight within my own body.
Since my diagnosis almost two years ago, I have been hoping and praying each day that dysautonomia would be mentioned in mainstream media. I figured if somehow, someway, we could get the term “dysautonomia” known, that maybe, just maybe, we could get funding for research and find a cure that so many of us need.
I admittedly don’t follow football as much as the average American probably does, but my family is full of die-hard sports fans, so I watch the big games with them. When I tuned in to the Super Bowl this year, I was rooting for the Eagles because, well, I’m from Cleveland and we all love a good underdog story here. It wasn’t until that day that I learned the name of the winning quarterback who would defy the odds and become the MVP of Super Bowl LII, Nick Foles.
As I watched the trophy be presented to the Eagles and you took the mic, I heard you mention that your wife Tori is your inspiration as she deals with an invisible illness. Then I heard you say the words, “My wife has postural orthostatic tachycardia syndrome.” My jaw dropped. Tori has POTS?! What?! Did you just say POTS on national television?!
As I stared at the television in complete shock, the first emotion I felt was sadness. Sad for Tori because I know the agony she goes through on a daily basis. Sad for you because I know the grief you must feel seeing the love of your life go through such pain and uncertainty – as I see my husband go through this struggle each day.
My second emotion was hope. So much hope. Hope that you would use your platform to speak up and start the conversation about dysautonomia. Hope that the media would interview you and write articles about dysautonomia. Hope that someday, because of you and Tori, we will find a cure.
Since that moment, you and Tori have exceeded my hopes and prayers.
You are using your voices to speak up.
To demand awareness.
To demand research.
To demand funding.
To demand a cure.
The words “thank you” will never be expressive enough to explain the gratitude I feel. You have given me hope. You have given me strength. You have given me inspiration to continue fighting.
Nick and Tori Foles, you are my heroes. You are the good in the world. Thank you for all you have done for those of us fighting dysautonomia. Together, someday, we will find a cure.
*Nick and Tori are donating all of Nick’s portion of the proceeds from his new book “Believe It” to charity. Dysautonomia International is one of the charities they have chosen to donate to. You can purchase the book on Amazon or find it at a bookstore near you!