The 5 People You Meet When Living With POTS

A diagnosis of postural orthostatic tachycardia syndrome (POTS) is life-changing, as are the symptoms often experienced years before diagnosis. POTS is far from a rare disorder. Millions in the U.S. are living with POTS and millions of others may be misdiagnosed with mental illness or another neurological or cardiovascular disorder.

Whether you’ve had POTS your whole life or recently acquired it, it’s very possible you’ve met the following five people.

1. The Disbelieving Nurse

Or ER doctor. It never fails. We’re going to occasionally get sick after hours or in an unfamiliar place. Our specialist or family doctor will be helpless to come to our defense. We’ll go to the emergency room with racing hearts, unable to walk, struggling for breath, and fainting only to wait seven hours and go home with a diagnosis of anxiety and Valium that we may not use. Why? Oversensitivity to medications.

When I had a reaction to a small dose of morphine, a nurse sternly told me that I just needed to calm down while rolling her eyes. Come on people, all it takes is a poor man’s tilt table to realize what’s causing our symptoms, if our medical charts aren’t enough help.

2. The “Expert”

It could be your boss, a neighbor, or a family member. In my case, it was a WIC nutritionist. Experts know that the “cure” to the illness you live with daily is definitely diet and exercise, even after you explain that there is no cure. Even after you share that you are exercise intolerant and unable to eat many foods.

Yes, exercise can help, but it isn’t a cure. Many of us can’t stand without fainting. I told my nutritionist that my specialist had me on a recumbent bike exercise plan and a special diet. She suggested I dance or jump for exercise after reading two sentences off of a Google search on POTS. Literally two sentences, and then she said, “Oh that’s no big deal.”

3. The “You-Cans”

Unrelated to the colorful birds of the rain forest, You-Cans remind you that POTS can’t be that bad. “You look fine!” they say, and “Look! You’re walking!” While we appreciate those who believe in us no matter what, there is a fine line between support and downplaying our condition. You-Cans cross that line by using their X-ray vision to determine whether we are truly sick or not. My favorite experience with this type of person was the Walmart greeter who scoffed at my mother and I for utilizing a wheelchair. My mom explained I’d been having multiple seizures a day and couldn’t stand for more than 10 minutes. He couldn’t understand how a person could walk in but not walk through the store and stand in lines.

We actually thought my dad was dying when he first became ill. My sister and I were sent to stay with my grandmother while my mom took him to a number of specialists all over the state. Luckily, by the time we discovered it was genetic, my dad was there to assure me I wouldn’t die, even if I felt like I was.

4. The Epiphany

At some point, we were all struggling with no answers. For my family, our primary care physician had a suspicion, but he wasn’t sure how to diagnose or treat us. For my father, he increased his blood pressure with medication. For me, he wasn’t sure what to prescribe that wouldn’t shrink my already low blood volume. He could only focus on trying to control my triggers like heat, stress, and dehydration.

Then came the Affordable Care Act, a true independence plan. Do I think it needs a little work? Sure, but it gave me my life back. With health insurance, my doctor’s support, and my family, I was able to see a specialist in Nashville. When we went in to see Dr. Muldowney, I swear I heard angels singing. He sees people like me all day, every day. It took him less than five minutes to diagnose me after five long years without treatment. He gave me as much of my life back as possible. “I can’t cure you,” he said, “But, I can make you feel better.” That he did. I’m able to work full-time now, and my husband and I are expecting our first child. Specialists are truly amazing.

5. The Fellow

It was years before I knew anyone besides my father who had an autonomic disorder. Then, when I became ill and started passing out and having seizures at work, a woman who had worked with my dad in the past recognized my symptoms. She acquired the illness after birth complications with her daughter and kept anti-seizure tabs in her purse.

A few years later I started a new job. As much as I hated to, like every other job I’ve had, I never mentioned my illness until the job was secured. I was shocked to learn my new boss had already heard of the disorder. Her best friend also had autonomic dysfunction and had actually considered applying for the job I had landed.

Bottom-line here: we’re not alone! I’ve recently joined online groups full of people just like me. It’s enlightening and empowering.

Most Mean Well

While some people are just nasty in general, I think most people, even those in disbelief or denial, mean well. They simply don’t understand autonomic dysfunction and may never unless it strikes their own family. The only thing that we can do is raise awareness and educate. I encourage you to seek out fellow POTSies and a specialist if you haven’t found one yet. It can take a long time to figure out what treatment works, if any, but it’s worth fighting for. Don’t give up hope, and don’t lose your faith in humanity.

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