One day, I was a local TV reporter running around town reporting breaking news — and the next, I could hardly get out of bed.
My symptoms began in June of 2020. I woke up one morning feeling so weak and depleted of energy that I struggled walking around my tiny apartment. My vision went black, and with each step, my heart raced to the point that I could hear the pounding in my ears. I was lightheaded, short of breath, and a wave of nausea hit me any time I was upright. My brain felt strange, almost as if I had the world’s worst hangover. I thought maybe I had COVID or the flu, but my results came back negative for both. My symptoms lasted about four days.
A few weeks later, I passed out on a bus stop bench in downtown Raleigh, North Carolina, while shooting a story for work. When I came to, a police officer was holding up my head and had already called an ambulance. My news station suggested I see a doctor before returning to work, so the next day I made an appointment with a cardiologist. I got an echocardiogram and wore a heart rate monitor for two weeks and was told that everything came back normal.
The next several months were pretty uneventful. The symptoms I experienced in June hadn’t returned and I was managing work and my social life just fine. I had complained to my family several times that I felt much more tired at the end of the day than I used to, but other than that I was doing all right. During this time I even applied to a sister station within the same company, as I had always planned to work my way up the ladder in hopes of landing a job in a top news market.
That all changed in March of 2021. The same symptoms I experienced the previous summer were back. I called out sick on a Monday, hoping I’d sleep it off. On Tuesday, I went back to work in a haze. My Apple Watch recorded my heart rate at 178 bpm while I was just standing still. I was dizzy, couldn’t think clearly and tried my best to hide my shortness of breath under my face mask. By the time I got back to my apartment to begin editing my news story of the day, I was more fatigued than ever before. I was so weak that I couldn’t walk without holding onto furniture. My vision was blurry and my head felt like it was going to explode. It was truly the worst I had ever felt in my life. The symptoms continued for two weeks straight. I knew something was seriously wrong.
I went back to the cardiologist, who performed a stress test. She said it came back normal except that my heart rate was higher than it should be for someone my age, and suggested that maybe I should try exercising more. As someone who has always been very active and full of energy, I knew that this was not due to a lack of conditioning. I left her office feeling defeated and tried making appointments with other doctors in the Raleigh area.
Over the next few weeks, my symptoms persisted with only a few days here and there that provided me some relief. Most days my heart rate would reach nearly 200 bpm while just doing basic tasks like washing the dishes. Managing work was getting progressively harder. Specialists near me had months-long waits for appointments, so my parents urged me to see if I could get an appointment at the Mayo Clinic in Rochester, Minnesota. They figured if anyone had an answer for what was happening, it would be them. Surprisingly enough, I was able to get an appointment in just six weeks. My station graciously allowed me to take some time off, and my mother and I flew up at the end of April.
After a week and a half of extensive diagnostic testing, I had my answer. I was diagnosed with a form of dysautonomia called postural orthostatic tachycardia syndrome, also known as POTS. While I was glad to finally know what was wrong, that feeling of relief went away after realizing that there is no cure for the condition.
POTS is estimated to impact one to three million Americans, most of whom are women of childbearing age. It’s a disorder of the autonomic nervous system that affects blood flow to the brain. This branch of the nervous system regulates vital bodily functions such as heart rate, blood pressure, temperature regulation and digestion. The most common symptoms are lightheadedness, dizziness, heart palpitations, chest pain, chronic fatigue, nausea, migraines, brain fog, gastrointestinal issues, blood pooling and tingling in the extremities, according to the Cleveland Clinic.
While the majority of people with POTS look healthy, researchers compare the quality of life in many POTS patients to those with conditions such as chronic obstructive pulmonary disease, congestive heart failure and kidney failure. For me, this is a challenging aspect of the condition — looking fine on the outside, but feeling like death on the inside. If I have a full face of makeup on and a smile, no one would know anything was wrong. As with many invisible illnesses, sometimes it’s hard to be taken seriously. Because of this, along with the fact that POTS is still heavily under-researched in the medical community, it takes on average five years and 11 months for patients to receive a proper diagnosis, according to Dysautonomia International, a nonprofit that seeks to improve the lives of those living with dysautonomia. And 59% of patients reported being told by a doctor that their symptoms were “all in their head” prior to being diagnosed with POTS.
To further complicate things, there’s also a lack of autonomic specialists in the country. When I looked for a doctor to treat my condition locally, I was surprised to learn that there were only four POTS doctors in the entire state of North Carolina. Those who do specialize in treating the condition are swamped with patients, and most have waitlists of six months to a year for new patient consultations. According to Dysautonomia International, nearly 50% of people have to travel more than 100 miles from home to receive POTS-related medical care.
Thankfully, it took me less than a year to receive a diagnosis and begin a regimen to try and help manage the condition. This includes the use of beta-blockers, blood pressure medication, increased sodium and fluid intake, the use of medical-grade compression and weekly physical therapy. While this has helped alleviate some of my symptoms, I never know how I’m going to feel from one day to the next since POTS impacts the entire autonomic nervous system. Some days my symptoms improve as the day goes on; other times I wake up feeling all right and within a couple of hours I’m bedridden. Unfortunately, right now my symptoms are still pretty terrible most days. I have a hard time standing for too long and often struggle doing normal things that I used to take for granted like driving a car, grocery shopping or going out with friends. I went from being the girl with an unlimited amount of energy who was always the first on the dance floor, to being dizzy and short of breath just doing the laundry. It’s a stark juxtaposition that I’m still getting used to.
Nearly a year after my diagnosis with not much improvement, I came to the difficult decision that it was no longer feasible to continue my career in television news — at least for now. Eight years ago, I took my first job in a newsroom and since then I never imagined doing anything else. I felt like everything I had worked for was slipping away. This decision crushed me, but I knew I needed a remote job that would be more manageable during this time. One day I hope to return to reporting if my symptoms improve.
Surprisingly enough, the COVID-19 pandemic has led to further research and awareness of my condition, leading many to hope that a cure is around the corner. While POTS can develop suddenly on its own, after pregnancy or a severe injury, more often than not it develops after a viral illness or infection — and now many COVID long haulers are being diagnosed with the disorder. When I went to the Mayo Clinic, I was told that the majority of their current POTS patients started developing symptoms after contracting COVID-19. Over the last two years, more and more medical journals are mentioning POTS, citing the link between the condition and the pandemic. There is also new research indicating that POTS may be an autoimmune disease. Dysautonomia International is funding the continuation of this study in hopes of identifying new treatment approaches.
While POTS has impacted my career and day-to-day life, I know that things could always be worse. My condition is life-altering, but it is not life-threatening, and I’m extremely grateful for that. My hope is that through continued awareness and research, those suffering from POTS and all forms of dysautonomia will be diagnosed sooner, have better access to treatments and specialists, and have the courage to be their own advocates even when the odds are stacked against them.