My name is Emily and I have multiple chronic illnesses. I have Dysautonomia (dysfunction of the autonomic nervous system), a genetic connective tissue disorder known as Ehlers-Danlos Syndrome (EDS), chronic regional pain syndrome (CRPS), as well as mast cell activation disorder (MCAD). All of this happened to me slowly, but all at once, if that makes any sense. It became obvious at 19 that I had major health issues. I had to leave college for a semester. Things were “sort of” under control for four years where I would take a semester then a leave of absence. Finally it became obvious that this wasn’t doable for me anymore. I moved back home with my parents and transferred to a college that had online degrees and eventually graduated. Now, at the age of 27 I swing from periods of mild independence to almost total dependence on my caregiver. A few years ago I was delivered a promise: I can only go downhill health-wise, the only question is the rate at which I do. As someone who has a body that functions more like a 50-year old I can only hope that the progress is slow.

I’m marching because the ACA allowed me to stay on my father’s insurance. The ACA also gives me the peace of mind of knowing that after my father retires and I need health insurance of my own that I cannot be denied due to pre-existing conditions. That I will be treated fairly and not punished for having health concerns that are not my fault, and also continue to have the health care that I need. Without the ACA none of those things will be true and being disabled is an expensive affair.  I always thought that I couldn’t be an activist because I wasn’t “out on the streets” but old rules don’t apply anymore. With this new administration the disabled, poor, and chronically ill will be fighting for their lives. Not to mention those who are persons of color, LGBTQIA+, Muslim, Jewish, or any other minority. I’m marching because no one else will march for me. No one else has the same reasons to take a stand, except those of us who live and know this life. We all have to stand together, united, and resist.