If you passed me on the street, you’d probably think I was a normal 20 year old girl. Well, actually, you’d probably think I was a normal 16, 17, 18 year old girl because I’m short and little and have a young face. (I get mistaken for 14 year old more than I’d care to admit…) Either way, if you saw me on the street, you would assume I was like all the other young adults you know: immature, maybe a little irresponsible or reckless, but nonetheless, fully healthy and able-bodied.

You wouldn’t know I had a disability that makes walking a challenge. You wouldn’t know that I can’t stand in showers, eat large meals, or that it takes an average of three hours every morning before my body tolerates gravity. You wouldn’t see me in an hour’s time, stretched out on the couch because outings wear me out. You probably wouldn’t even know about POTS and to that I’d say, “lucky you.”

But even if you knew I had a disability, you might still be confused because my disability doesn’t look the way you’d expect it to. I don’t have crutches or a wheelchair to symbolize my limitations (although some people with POTS do use wheelchairs), and I can walk to some extent, as long as I’m not in the middle of a flare. However, my ability to walk is limited and fleeting, and all it takes is a big lunch, a rough night of sleep, or ten minutes too many in the bright, hot sun before this privilege is taken from me. In this way, POTS is a series of losses over and over and over again.

Graphic of what different types of disabilities can look like, created by StandingUpToPOTS.

Living with an invisible illness often feels like living a double life. With clean clothes and a full face of makeup, I can pass as a vibrant, abled young person, and on a good day, I feel like one too. But makeup or no makeup, POTS is with me wherever I go. There’s no universal sick or disabled “look”. POTS can look like anyone; POTS looks like me.

Sometimes I feel grateful that my illness is invisible. It gives me the freedom to pretend, the ability to delude others into thinking I’m as well and able as them. Other times, it feels burdensome, like a dark, twisted secret, and I find myself tempted to tape an “OUT OF ORDER” sign to my front, craving some kind of tangible way to make my illness visible, validated, and seen.

Graphics created by StandingUpToPOTS, explaining the chronic, invisible nature of POTS.

Before my diagnosis, I struggled a lot with the discreet nature of POTS. It was so discreet in fact, even my doctors couldn’t see it. It took over a year of sorting through patterns of symptoms before I landed in the right doctor’s office with at last, the right diagnosis. The subjectiveness of POTS symptoms (such as dizziness, fatigue, and nausea to name a few…) perpetuates the disease’s misunderstood nature and frequent misdiagnosis; for over a year, I battled against thoughts of, “what if it’s all in my head?” and, “what if they don’t believe me?”

But for an illness that is invisible, POTS physically manifests in many ways. It looks like salt tablets and medication bottles and stacks of broth in the pantry. It looks like compression stockings, electrolyte tablets, sitting on curbs and nearby benches. It looks like liters and liters of water, fit-bits and heart rate monitors, even the towering stack of journals in my bedroom. POTS isn’t as noticeable as crutches or a wheel chair, but it’s evident if you know what you’re looking for.

  • Picture of various medical devices and foods that help manage POTS
  • Picture of myself
What POTS looks like vs. What POTS looks like

Despite this subtle visibility, I often I feel like I divide my time between two separate identities; one that’s neat, energetic and socially acceptable, and one that’s hidden, drained, weary, and spent. There’s the raw, gnarly side of me that only my couch and immediate family see, typically at the beginning and end of my day, and then there’s the presentable part reserved for strangers, friends, and brand new acquaintances. When I’m all dolled up, I look as healthy and able as anyone. But at times, a face of makeup feels like a mask, my clean clothes a costume for someone more well than me.

Sometimes POTS makes me feel like Hannah Montana, although admittedly less like a rockstar and a little bit more like a fraud. Coming home from outings with friends, the bubbly, chatty version of myself slides off like a wig, falling away once I’m within the safe walls of my home. Shuffling to the couch, I begin to claim my second self, feeling my personality abandon me as my body hits the worn out leather. During that swift moment of transformation, I’ll wonder which persona is closer to the truth, and how much of my character is merely an act.

Picture of Hannah Montana, a character on a television show that was popular on Disney Channel.

Not many people see this version of myself. They see the side of me that’s well enough to attend the party, the outing, the lunch with friends. Coming home to this drained part of myself often feels like coming home to a festering secret, and for a while, these identities felt separate and conflicting. I was convinced that the existence of one identity completely invalidated the other, that I couldn’t be the bubbly person I’ve always known myself to be and the depleted girl I’m left with once my illness takes the reigns. But the longer I navigate life with POTS, the more I understand that they are connected, that I am both. And with time, I have learned that I’m not the only one that lives this way. That all of us carry struggles that are camouflaged within.

We all harbor some kind of hardship. We all inhibit this Earth with pain that’s cloaked, covered, and concealed.

I used to think my invisible illness made me less-than everyone else, but really, if anything, it’s made me more like everyone else.

Big thank you to StandingUpToPOTS for creating the helpful graphics used in today’s blog and for expending consistent effort to raise awareness about POTS.