I'm Redefining My Chronic Illness (And You Should Too!)

Hi! If you've landed on this page it's safe to assume that you either have been diagnosed with POTS, or you suspect that you have it.

Postural Orthostatic Tachycardia Syndrome (POTS) is a condition that affects the autonomic nervous system and can cause symptoms like lightheadedness, dizziness, brain fog, and an elevated heart rate when standing up. For those who are diagnosed with POTS, it can be a life-changing experience that can be both challenging and frustrating.

Being diagnosed with POTS can be a difficult process, as the condition is often misunderstood and misdiagnosed. It takes the average person years of visiting more than 7 different doctors and specialists to receive a POTS diagnosis. Going through those years of confusion and anxiety can be almost worse than the symptoms of the illness itself. The emotional toll of that process made me absolutely miserable.

I was first diagnosed with POTS after I fainted on an airplane 15 years ago. I was incredibly lucky and was diagnosed immediately by my primary doctor after extensive testing including a tilt-table test. However, there wasn’t a lot to be done at the time. I was put on Fludrocortisone and sent on my way. Fatigue and lightheadedness continued, but I had been living with it for so long that I didn’t know otherwise.

Truthfully, at the time I had no idea what POTS was. I couldn’t explain to anyone what my condition was and certainly nobody had heard of it. There were no resources on the condition. For the longest time I told people that I had a heart condition. I only really in the past 3 years have come to understand that POTS is a form of dysautonomia, and these are neurological conditions.

Everyone’s symptoms are different with POTS, which is what makes it so difficult to diagnose. When I was first diagnosed 15 years ago, I was experiencing a little lightheadedness, but overall it did not impact my life. A few years ago, I got a whole new set of symptoms. Even as someone with a prior POTS diagnosis, it took more than 6 months and a slew of doctors appointments and tests to find out that these were simply new-to-me symptoms of POTS. It was mentally and physically debilitating. None of my doctors knew how to help me. I decided to explore the world of holistic healing and started seeing naturopaths, dieticians, chiropractors, and many other practitioners. I spent thousands and thousands of dollars desperately seeking answers from anyone who knew anything about my illness. It has taken a long time and a lot of work but I am finally coming out of the fog, and I want to help others who are at the beginning of that daunting journey with not a clue what to do.

Why am I talking about this now? For years I thought that I was alone and in the minority. Now in a post-covid world I find myself surrounded by people who are suffering and cannot obtain a diagnosis or a plan of action on how to feel better. On top of this tragedy, there is a dire shortage of doctors who have heard of POTS, let alone have any clue how to care for patients who's lives have been turned upside down. This blog is for those people, and for anyone who is suffering from a chronic illness. You are not alone.

Reports show that 9%-61% of people who have had coronavirus experience POTS-like symptoms. That is an actual statistic. The fact that that range is so wide shows how little is known about this illness. If you are suffering from fatigue, brain fog, heart rate irregularities, pain, weakness, dizziness, anxiety, and digestive issues and no one can figure out what is wrong with you - your nervous system is likely disregulated. You can be experiencing all of these symptoms (and many more) or just a few.

Living with POTS can be challenging. I spent a long time filled with anxiety and anger about my diagnosis. But I recently decided that I am not going to let it hold me back. The bad news is that there’s no cure for POTS - but the GOOD news is that it can be SO much better than it is right now. It takes time, but you can get your life back. We can't change the things that happen to us, but we can change our outlook on them.