Postural Orthostatic Tachycardia Syndrome (POTS) is a form of dysautonomia, a disorder of the autonomic nervous system, that affects blood pressure which in turn makes it difficult or impossible for people to maintain normal heart rate when they stand upright. Because most symptoms of POTS are not usually visible (except if the person faints which does not happen to a majority of patients), and the fact that you will not likely see a POTS patient on a bad day, POTS can indeed be referred to as an, “Invisible Illness”.
“But You Look Just Fine”
Most of the symptoms of a POTS episode are simply invisible. In fact, all or most POTS patients have heard a well-meaning person say to them while suffering an episode (me included), “But you look just fine.” During an episode, I experience an overall feeling of malaise and many systems being affected by the autonomic nervous system dysregulation simultaneously. Limbs will grow very cold, muscles in my upper body will grow tense and weak at the same time, my heart will begin to race. On the exterior, I really do look fine; maybe a little tired, but there are no obvious external signs as to something going wrong inside. POTS patients struggle with maintaining credibility with those around them, or feel that their credibility can be called into question.
I Become Invisible
It is rare that you will see me on a bad day because a POTS flare-up or episode can require me to rest at home with my legs elevated. This can limit my ability to run errands, attend functions, or make dinner. Not to overuse the term, but even I become invisible during my most trying moments with POTS except to my loving family with me at home. During moments of remission, I’m out and about. I can plan a birthday party, attend parties, go shopping, do step aerobics, take a hike, attend a concert, and take a short weekend trip away (of course not all at once). Therefore, you will only see me on a good day – when the POTS is fully-controlled or away.
Why the Invisible Illness Blog?
Through sharing my story with POTS, I aim to make POTS less invisible. To survive POTS, you need the support of those around you – not only by qualified medical professionals – but your family, friends and colleagues. My mission is to provide a resource for other POTS Survivors and the people in their lives so that they know they are not alone in dealing with this. I invite you to share your questions and experiences here on this site. If we combine our efforts, we can raise awareness of this disorder, and improve the quality of our lives and others with compassion and credible information.
Please note: no content on this website should be treated as medical advice or be used for diagnosis. POTS affects patients differently, and the severity can be across a wide spectrum. POTS is a serious medical condition that requires thorough evaluation and diagnosis by a licensed physician.