I Have POTS––An Invisible Illness That Impacts My Entire Life

I’ve always been a fainter. Everyone in my life knows this, because they’ve either seen me faint in person or they’ve heard tales. There was the time I barfed and fainted simultaneously in front of my choir in college, or the time I passed out in front of the frozen custard shop in Downtown Las Vegas and my three friends had to catch me, or the time I fainted in church on the stranger next to me and somebody called the paramedic, to whom I insisted “I’m fine, I don’t need to go to the hospital. I just faint sometimes.”

My very first fainting episode occurred when I was seven years old. I had eaten a large amount of ice cream and was sitting at the kitchen table, procrastinating doing my homework. All of a sudden, I felt really woozy and lost consciousness. I came to with my face in a puddle of regurgitated ice cream. It happened next in fourth grade when, while at school, I started to lose my vision, and I proceeded to pass out while walking and hit my head on the classroom wall, to the horror of my teacher. These acts of fainting have always been an overt expression of my underlying illness, but they are just the tip of the iceberg. The invisible battle that I fight day-to-day is the hard part.

It took almost three decades of being misdiagnosed and told that I’m “perfectly healthy” to discover that I had a chronic illness called Postural Orthostatic Tachycardia Syndrome (or POTS for short). When I stand up, my blood pressure plummets and I get very lightheaded. It feels like my heart is beating out of my chest, and my blood pools in my legs. That causes lack of blood flow to my brain, and then, if it’s a really bad POTS day, I have to lay down on the ground so that the blood gets redirected back to my brain. Just walking down the hall feels like running a 5k, my heart pounding and having to catch my breath.

POTS is a form of Dysautonomia, which essentially means that my nervous system is thoroughly confused and isn’t able to regulate itself. The reasons for having POTS can be very complex to pinpoint, and most doctors just throw salt tabs and beta blockers at you to minimize the symptoms.

Other delightful effects that I experience day-to-day are extreme fatigue after eating anything due to blood flow pooling around my digestive system, random bouts of blurry vision, and digestive issues such as alternating constipation and diarrhea, as well as bloating that makes me look like I’m 5 months pregnant again. Delightful. Hot weather makes everything worse, and I can’t forget the brain fog. Some days I have a hard time finishing sentences.

While it’s a relief to finally know what is wrong with me, it doesn’t make parenting any easier, especially as a work-from-home-mom and the primary caregiver to two tiny humans. There are some days that I can’t hold my two-year-old. Getting up suddenly in the middle of the night or early morning with the kids when my POTS symptoms are worse feels like playing a game of Russian roulette (am I going to pass out this time?). Staying on top of the chores goes on the backburner when standing up is a challenge in and of itself.

Self-care is virtually impossible with little ones, especially when self-care with POTS is characterized by minimizing the amount of time on my feet. There are butts to be wiped and meals to be made and owies to be kissed. Toddlers have no chill, and my preschooler maybe has 50% chill — every need still feels urgent to them at this age (even if it’s just getting the booger off of their finger).

What’s even harder is the slow burn of guilt that I feel on the regular. Since giving birth to my son, my POTS symptoms have gotten worse, and thus I have less stamina for motherly duties. My preschooler can’t fully grasp why I don’t feel well enough to bake cookies. My toddler doesn’t understand why I don’t want to go outside and play when it’s hot out. After all, I don’t look sick, I just look tired.

Sometimes I’m (almost) grateful for COVID, because it forces me to limit my time spent out of the house. I am spared having to explain why I’m not up for a playdate (the park is my nemesis — it’s sunny and requires a lot of standing and following children around). I have a good excuse to order groceries instead of having to haul the kids in and out of car seats and into shopping carts, which can be enough to send my heart rate through the roof.

Having POTS was a major factor in decision making as to whether or not to have a third child. My husband and I dreamed of having a large family, but now two feels like more than I can physically handle most days. Sometimes I grieve the child that is likely never to be.

I could sit and stew in guilt or victimhood, and sometimes I do love a good pity-party. However, it feels better to redirect my brain when I want to go to that place. The thought that helps me combat the guilt is, “How is this perfect?” That helps my brain get creative to find reasons why this could actually be a good thing. My illness will help my daughter be compassionate toward others who are differently abled. My son will learn to be more independent when I’m unable to dote on him. They are learning how to play creatively together because I’m not capable of constantly entertaining them.

So how is this perfect for me? It shifted my life in a big way. Before my POTS hit me hard, I was a birth doula and spent many long days and nights away from home, supporting pregnant people and their families. While I loved my job, my POTS symptoms got worse and the lack of sleep as well as being on my feet for long periods of time was really wearing on me. It was an easy choice to pivot my career and get additional professional training. Now I’m a motherhood transition coach and get to work from home, from a seated position, which I am so grateful for.

October is Dysautonomia Awareness Month, so let this be a gentle reminder that you never know what kind of battle someone is fighting. Things are finally moving in the right direction for me, as far as getting help to discover the root cause of my POTS, and I am optimistic. I’m considering getting a mobility aid for the really bad days, and a handicap placard, which I am currently trying to wrap my mind around; I was misdiagnosed for so long that a little voice in my head still likes to tell me that I’m faking it.

I can also take comfort in knowing that my kids will have daily opportunities to learn how to be better humans. When it comes down to it, I’m okay with being the reason that they learn how to be compassionate people who look out for the needs of others. They also witness me practicing radical self-love on the regular, which looks like requiring them to be patient while I meet my own needs. I hope that one day, they can extend that same love to themselves and those who are lucky enough to know them.