Fighting to Get a Diagnosis

5 years. It took 5 years of fighting doctors to get an important diagnosis. 5 years of knowing something was wrong and not being believed by family, friends, and yes, even doctors. Here’s what happened.

Shortly before the beginning of my senior year of high school (2013), I was dancing in a parade and got pretty severe heat stroke. I collapsed and was taken to the hospital via ambulance. And while I’m unsure of whether or not the heat stroke caused/ triggered my health issues, that’s around the time when I first started showing symptoms of many of my health issues. A few weeks later, my body gave out at a friend’s house, and at one point I wasn’t breathing and they couldn’t find a pulse. So I was rushed to the hospital once again, and doctors were baffled as to what was going on with my body. I had ultrasounds and heart monitors and EKGs… the works. Everything was coming back normal. But I was passing out, had crippling chest pain, and was even having difficulty breathing at times. I was in and out of the ER more times than I could count. I was in the school musical that fall, and even though I was just an ensemble dancer, I had an understudy because my health was so unpredictably poor. There was even discussion of having an oxygen tank backstage just in case. There were students who had CPR training and were prepped just in case. I was (and still am) stubborn as hell, so I insisted on going onstage no matter what. This persisted until the end of my senior year when I landed the lead in Twelfth Night, and by showtime, my body was so beat that I genuinely passed out almost every time I walked off stage. Looking back I don’t know how I was able to recite Shakespearian monologues when I couldn’t even see straight. It was really bad, but the doctors explained away all my concerns as “just anxiety” and sent me home. It got to the point where the people I was living with wondered if I was faking passing out and would leave me alone when I was having trouble breathing and didn’t want to take me into the ER. I knew there was something major going on, but nobody seemed to want to believe me!

Fast forward to 2015. I had just moved out of a friend’s house and was finally in charge of my own life. While celebrating Easter with my boyfriend’s family I started to feel very woozy. According to his grandmother, I was burning up after dinner. I retreated to his bedroom and laid down on the floor with a cold washcloth on my forehead, hoping the dizziness would pass. While laying down, I passed out! When I returned to consciousness, I felt like I was drowning in a pool of jello. My recollection is spotty from there. I remember hearing his mom on the phone with the doctors. I remember them telling me to drink something from a straw, and that no matter how hard I tried, I apparently wasn’t drinking. Next thing I know, I’m in the back of the ambulance. I remember the paramedic in the ambulance telling me “I know you’re faking all of this, so drop the act.” That was scary because I knew something was wrong, but even the EMT didn’t believe me, despite having carried me out of the house on a stretcher.

It’s now 2018. I have my own health insurance, my own wheels to go to all my doctor’s appointments, and a lot of fight to get help. I went to my primary care doctor multiple times to complain about passing out, but it wasn’t until I made a comment to my warm water pool therapist about passing out that I was finally set on the right track to finally getting a diagnosis. She sent in a referral to see Dr. Randall*, who I later learned is the best doctor for this type of problem that’s in-network. Coincidentally, he books out 3-4 months in advance. I knew my body couldn’t wait that long. I had spent 5 years having a front seat to my body getting weaker, my mobility getting significantly more limited, and passing out increasingly more frequently. I couldn’t go 24 hours without passing out and I spent many days trapped in bed from overpowering lightheadedness. Miraculously, I got off the waitlist less than a week after crying from fear on the phone with my primary care doctor because I knew my body couldn’t wait 3 months to see this doctor. Within 15 minutes of my appointment with Dr. Randall, he knew exactly what was wrong. He said he was 99% sure I had postural orthostatic tachycardia syndrome (POTS), and ordered proper testing to ensure a proper diagnosis.

Two weeks ago, I participated in a tilt table test at the hospital, which confirmed the diagnosis, and my 5-year fight finally gave me some answers. I was strapped to a table laying down, and my vitals were closely monitored for 30 minutes. Then the table was raised 70 degrees and I immediately felt sick. It was hell, and at one point I was begging them to stop the test because I was in so much agony. But I was able to stick with it, and after 22 minutes, I lost consciousness. Based on how my vitals looked when I passed out, it was confirmed that I do indeed have POTS. I immediately felt like giving a big “middle finger” to all the doctors, nurses, friends, and others who didn’t believe me, thought I was faking, and/ or ignored my concerns. I lost 5 years and missed out on a lot because of my undiagnosed POTS, and even when I was able to do things, I was often miserable. Being ignored when you have a chronic illness, whether it’s diagnosed or undiagnosed, is a common thing in our country. I’m in multiple chronic illness support groups, and one of the main things we support each other through is dealing with rude, invalidating doctors and the fact that we have to fight tooth and nail to get any sort of help. It’s appalling how horrible America’s healthcare system is. I have known people to chose to refuse treatment and die instead of getting help, sometimes because of cost, but also sometimes because of doctors’ attitudes towards people who have chronic illnesses. We have to fight our bodies every day, we shouldn’t have to fight to get a diagnosis and treatment too.

*name changed for protection issues