I suppose I should start this by introducing myself.
Hello! My name is Angela Juris and I am a 23-year-old spoonie. I was diagnosed in September 2015 with Postural Orthostatic Tachycardia Syndrome (POTS) and general dysautonomia (among a slew of other technical terms that would just bore you to death to read.) Basically, my body doesn’t know how to handle its basic functions: breathing, digestion, heart rate, blood pressure, etc.
Dysautonomia is a chronic illness; this means it will last anywhere from a few years to the rest of my life. There are cases where a young person (teenager) will grow out of it, though that does not seem to be the case with me. I started having symptoms around 18 and lost consciousness for the first time on June 9th, 2013. The month following, I lost 40 pounds from being too nauseated to eat. For years I was told it was just a side effect of generalized anxiety. Funny thing is, I had never had an anxiety attack in my life. Though I do have PTSD, so I rolled with this, as the medications they gave me were seeming to work.
Then about a year later I began passing out 3-4 times a day, and I started to beg my doctors to figure out what was actually wrong with me. Their answer was to change my psychiatric drugs. We tried this for a bit, while my mother (who happens to be a nurse) and I started to do our own research as to why this may be happening. We asked for any test we could find that may lead to something. Finally, an ER doctor brought up POTS, and the next day I asked my primary care physician for a tilt table test (TTT.) Long story short, I went through 3 doctors and another year before I got the test, and it confirmed our suspicions.
Our journey has only started at this point. Dysautonomia is a relatively new term, and there really isn’t much that can be done about it. There are even plenty of doctors that will tell you it doesn’t exist. I will tell you, my symptoms are very real, and can be very frightening. No 23 year old wants to be in a wheelchair. No 23 year old wants to feel like a burden to her new husband. I have spent the last year in and out of doctors offices, on and off medications, trying to find the “pharmaceutical cocktail” that will make me feel “normal” again.
After over a year of feeling alone, I have made it my mission to make sure no one ever feels that way. My pursuit doesn’t end at dysautonomia but encompasses all chronic illnesses. We all are isolated. Only others with our prognosis know what we’re feeling.
I’m here to show you that you’re not alone and that we can go through this together. Hopefully, my journey can shorten others’ so they may find courses of treatment quicker, and be back to themselves without the years of suffering.