What I Wish People Knew About Working as Someone With POTS

My illness isn’t always invisible, but to see it, a person might have to look a little closer. I look like the average person, but if you leaned in just a bit, you would see bruising on my ankles that never goes away. You’d see bags under my eyes despite sleeping all night. (I’m never fully rested.)

I have POTS (postural orthostatic tachycardia syndrome). It’s a malfunctioning of my autonomic nervous system that causes my heart to work much harder than the typical person. Aside from my heart rate, other processes in my body that should work automatically, like breathing, blood pressure, temperature and gastric function work improperly. This can result in a myriad of symptoms including high heart rate, low blood pressure, blood pressure that fluctuates rapidly, orthostatic intolerance (a change in vitals when changing positions that often leads to fainting and seizures) to name a few.

I’m also one of the lucky ones.  I’m now functional enough through a combination of medication, physical therapy, and sheer coincidence to be able to work full-time. I am the director of a nonprofit organization that teaches adults to read and write and to speak English as a second or other language. I am very passionate about this cause, and being that the organization is so small, I’ve been provided with a wonderful opportunity to work in an environment that accommodates doctors appointments, occasional bedridden days, and the need to lie down occasionally. It also lets me utilize my strengths in a way that helps other people and makes an impact on my community.

All that being said, I sometimes wish people knew exactly what I experience while juggling a career, a family and a chronic illness. My job is wonderful, but it is also stressful. I know if I fail, if I slack, I am letting down our entire community, not just myself. I live and breathe for this organization and my family. Sometimes when I feel I’ve let a stakeholder down, I wish they knew how my vision blacks out when I sit in meetings. I wish they could see my legs turning shades of purple underneath my jeans. I wish they knew that I am nauseous and dizzy at least 80 percent of the time. I wish they could see the seizures I have at night when the day has been too much, or hear me scream when the chest pain is unbearable. Of course, if they did, they might think less of me or pity me, so I smile and put on a good face. I struggle to act “normal,” because I’m afraid others will see me as less.

An unpleasant incident prior to a board meeting last night left my heart racing and skipping throughout the meeting.  Everyone at the table was very supportive and understanding.  They have never underestimated me.

As I sat down to write this, I realized I don’t have to hide my symptoms. I’m in the perfect position to advocate for others like me. Lately, as I train new volunteers and meet new people, I tell them about my diagnosis and how working with a nonprofit changed my life for the better. It’s a message worth sharing: disability doesn’t make us any less professional.  If you have a similar struggle, I challenge you to open up to your colleagues and to the world. We’re going to change the stigma, one story at a time.