Patients

I call myself a Professional Patient. I have learned that you must advocate for yourself; fight to find the right doctors and support systems; and demand to be seen as a person, not a disease. It took FIVE YEARS to find a doctor who would challenge the insurance companies and get me life-changing infusions. I lost those years, but I learned how to make the healthcare system work for me. It is not the life I dreamed of; but it is beautiful. 

April 22, 2021, is a date that is clear in my head because that is the day that I had a doctor tell me “you have been sick for too long, we are going to figure this out.” I had been sick for 12 years at this point and had been fighting for answers for almost as long. It did not matter what I said, how bad I felt, or who I brought with me - every other doctor had blown me off. After 12 years of fighting, I was finally diagnosed with POTS. After my diagnosis, The Dysautonomia Project and their book helped me better understand what was going on with my body. 

I went to numerous specialists, including gastroenterologists, cardiologists, neurologists, endocrinologists, psychologists, physical therapists, and even psychiatrists/ psychotherapists to no avail. It was not until I found an expert well-versed in autonomic dysfunction that the symptoms began to make sense. 

My health began to decline at the end of 2018. My daily symptoms consisted of chest pain, lightheadedness, severe tachycardia, ectopic beats, migraines, near fainting, blood pooling, GI issues, tremors, fatigue, and insomnia. I could not stand without feeling like I was going to collapse. It took over a year for me to be formally diagnosed with Dysautonomia.  Prior to this, I had a countless number of doctors tell me that my symptoms were “just anxiety” and mainly “all in my head.” If it weren’t for my own persistence and health advocacy, my diagnosis would have taken years. The Dysautonomia Project helped me tremendously throughout my diagnosis, without them I would not have discovered what was wrong with me. The education and resources that they provide are key for individuals like me. 

I try to count my blessings, instead of my limitations. How we approach illness will define how we mentally process the journey, but sometimes it is hard. I am lucky to have a tribe of people who always remind me I am more than my illness.

Balancing my symptoms and the side effects of my medications is difficult. As a first-year medical school student, my conditions have given me purpose and passion for what I study, but the fatigue and uncertainty with flare-ups have been my most constant daily struggles. However, these circumstances also came with growth, which has helped me overcome challenges from and beyond my chronic illnesses with resilience.

I am a 57-year-old woman who has had dysautonomia symptoms since childhood. At the time, in the 1970’s, no one knew what dysautonomia was and I was treated as an anxiety patient. It was not until 2017 that a Cardiology PA diagnosed me with Inappropriate Sinus Tachycardia. In 2018, I saw an endocrinologist who referred me to a cardiologist for a tilt table test and I was also diagnosed with POTS. I cried after my diagnosis – I finally had the answers I needed after years of suffering. 

Dysautonomia robs you of being reliable. It complicates other illnesses and makes taking certain medications impossible. I am steroid dependent and as my dysautonomia has changed so much over the last 20 years, it makes me nervous for the challenges I may face in the future. I have always managed (with an amazing support system), so I know I will make the best out of any situation. I am so happy there are organizations like The Dysautonomia Project to bring awareness and understanding.