Growing Deeper Roots: My Story of Invisible Illness

Sometimes, the hardest part about being sick the way that I am is that on most days, I don't look sick. I suffer from an invisible illness. Those who I haven't told, don't know that I'm sick and those who do know, rarely understand the severity.  In my last few months, I have felt misunderstood, doubted, and judged because I can't do what a healthy person can...and yet, I look healthy. Managing my invisible illness, neurocardiogenic syncope (whether from a virus producing POTS or from my pituitary macroadenoma) would be significantly easier, if people understood it. Unfortunately, I have rarely met anyone who has any familiarity with dysautonomia.  Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The autonomic nervous system controls "automatic" functions of the body like heart rate, blood pressure, digestion, pupil dilation and constriction, kidney func...

I'm on a roller coaster. And for someone who faints at the slightest increase of altitude, this is not good.  BUT! I have an update.  After many tests and a hormone treatment/analysis my team here at Johns Hopkins Bayview Medical Center has decided that removing the tumor is not our best option. From here they have diagnosed me with POTS.  POTS is a type of dysautonomia that is characterized by orthostatic intolerance and excessive tachycardia. POTS stands for Postural Orthostatic Tachycardia Syndrome and affects over 1 million Americans. While there is no definitive known cause for POTS, many believe that viral infections can cause this malfunction of the automatic nervous system. One of the leading viral infections to cause POTS? Lyme disease. (I think I've seen this tree before) While the name and credit of POTS is relatively new (1993), the syndrome has been around for a while under many other names.  Treatment of POTS is difficult because it is o...

Remember when I said that I was excited for the tilt table test? Remember, I thought it would be fun? I was wrong. I was very very wrong. So they strapped me to a table and let me lay flat. Then they recorded my BP and pulse. Then they tilted me up 10 degrees at a time while measuring these vitals. The goal? To induce my symptoms while measuring my vitals. Induced, they were. The head rushes, nausea, vertigo, disorientation, dizziness, blurred vision...all of it at once, combined with the anxiety of a potential syncope episode and the fact that I was strapped to a table, was the complete opposite of fun. In addition, my BP dropped from 117/65 to 89/55 while my pulse when from 84 bpm to 135 bpm...not a normal reaction to sitting up. I'm keeping the new med students and interns interested as we await more news. On the upside, I have been moved to a new diet at the hospital and now have twice the amount of options!