The Road to a POTS Diagnosis: My Journey Through Bravery & Comics

Hello! ’Tis I, your friendly neighborhood comic artist, @potsiespoons!

October is a most magical month for me—the changing leaves, listening to my spooky playlist, and talking incessantly about Dysautonomia Awareness Month! It is, as the kids say, pretty darn neat.

Dysautonomia is an umbrella term for a number of conditions that affect your autonomic nervous system, which controls all the stuff that happens automatically in your body. In most basic terms: everything a healthy person's body does automatically, a dysautonomia patient's body may do incorrectly—or not do them at all! This causes a lot of symptoms, ranging from extreme changes in heart rate to brain fog, chronic fatigue, gastrointestinal issues, improper temperature regulation, and more.

I was diagnosed with Postural Orthostatic Tachycardia Syndrome—POTS for short—in 2008, when I was 15 years old. POTS is a common form of dysautonomia, and it’s estimated that 1 in 100 teenagers has POTS. Unfortunately, many doctors still don’t know much about it, if they know anything about it at all, and the average time to get a POTS diagnosis is SIX YEARS. In that time, many patients will be misdiagnosed, misunderstood, and told that their symptoms are “all in their head.” The road to a diagnosis is often extremely difficult and discouraging, and that’s why Dysautonomia Awareness Month is so important.

When I was first diagnosed, I was able to control my symptoms pretty well, but in 2015, I was in a car accident that threw all of my symptoms into overdrive. After a trip to the Mayo Clinic in early 2016, I started to consistently make comics about POTS in an attempt to share some of what I’d learned at the Mayo Clinic and to encourage other patients. I love drawing these comics, and they’ve led me to a great community here on Instagram. I’m so grateful for the support and encouragement I receive from this community on a daily basis. These days, I draw comics about POTS, dysautonomia, life with chronic illnesses and disabilities in general…and a fair amount of illustrated jokes.

Life with any chronic illness is difficult—the symptoms that are the biggest challenge for me are fatigue, brain fog, and pain, and I try to be honest about the hard things I go through as a chronically ill person. But I also talk a lot about the positive things in my life—and I've realized that a lot of the positive things have actually happened because of my chronic illnesses. I've met a lot of fantastic people through my comics, and I've gotten to participate in some really amazing experiences! Because of my advocacy work, I got to fly out to Facebook Headquarters earlier this year—and this summer I got a behind the scenes peek at the Kennedy Space Center. These were both mind-blowingly awesome experiences, and they never would have happened if I hadn't started drawing POTS comics three years ago.

I often encourage people to be brave about sharing their experiences with chronic illnesses—because it really does take a lot of courage to be open and honest about the difficult things we go through in life. But when we're open and honest about our struggles, we find a lot of people who understand us—are encouraged by us—and are maybe even a bit braver because of us. And I think that kind of community is really amazing and beautiful.

Plus, you never know where being brave might lead you, and what unexpected adventures it might pop up.

Dysautonomia Awareness Month is coming to a close—but for millions of dysautonomia patients around the world, it never really ends. So keep being brave, warriors—keep sharing your stories—because your stories can help so many people searching for their own answers and the reassurance that they’re not alone.

For more from Vanessa, follow her on InstaGram: @potsiespoons