Imagine

Picture this: you’re down with the worst flu imaginable and you just can’t shake it. You take comfort in the certainty that you will soon resume your active, healthy life. Until, months (or, as is more often the case, years) later, you learn that you will not. Ever. You’ll have better days, and worse days, but life as you knew it is over. No cure, no approved treatments or medications, and very little peer-reviewed information. A quality of life similar to that of a patient with COPD or congestive heart failure. Welcome to the world of dysautonomia/POTS.

Imagine that every time you sit up in bed the room begins to spin and standing elevates your heart rate so high that you faint. Imagine that you are so overwhelmed by nausea and gastrointestinal disturbances that you begin to lose significant weight. Imagine that you are always either sweating profusely or shivering with cold.

Imagine you’ve just entered your teenage years and you must learn to relinquish your dreams one by one. The private high school you worked so hard to gain admittance to, your participation on a gymnastics team, your musical theater performances. Harvard. Childbearing.

Imagine you are one of the unlucky subset of dysautonomia patients who also have comorbid mast cell and connective tissue disorders, causing bizarre allergic reactions and intense joint and muscle pain. Or that you also have one or more autoimmune disorders that often accompany or underlie dysautonomia.

Imagine being told repeatedly by medical professionals with little or no knowledge of this condition that it’s psychosomatic; that you’re just anxious. Or imagine all manner of well-intentioned suggestions to (pick one) get more exercise, try a different diet, think positively. Imagine being accused by school personnel of malingering. Imagine the skepticism of your friends and even family (because, after all, there’s nothing they can see), and their eventual disappearance from your life. Imagine the resulting isolation, depression and anxiety.

This is not just our story. Dysautonomia, some form of malfunctioning of the autonomic nervous system, affects more than 70 million people worldwide. Postural Orthostatic Tachycardia Syndrome (POTS) is a form of dysautonomia that affects nearly 3 million Americans, including an estimated 1 in 100 teens.

While our journey has developed our resilience and strength and brought us several silver linings, my hope is that spreading awareness will lead to further research and improvements in treatment or even a cure. Or at the very least, faster diagnosis and understanding and compassion for those afflicted.

October is Dysautonomia Awareness Month. For general information or to learn how you can help, visit

http://www.dysautonomiainternational.org/

https://www.dysautonomiasupport.org/