In September 2008, I was a seemingly normal, healthy college student. I was active, I had friends, I’d done well in all my classes, and I was just starting my sophomore year. Then, one day, I was walking home from the dining hall and collapsed. In October 2008, I was unable to get to class because I couldn’t stand up without collapsing. The next few years I fought to stay in college (against medical advice) and to find a diagnosis for why I kept collapsing, having seizures, and experiencing tachycardia along with numerous other symptoms.
After fighting tooth and nail to prove something was going on and it wasn’t all in my head, I was diagnosed with an autonomic disorder called POTS (Postural Orthostatic Tachycardia Syndrome). However, I was also basically told to walk it off and stop letting my delicate lady brain invent problems. I received minimal medical support for several years thereafter and often left appointments in tears, humiliated, or utterly hopeless. Without the ACA, it would have ended there.
Because of the ACA I was able to see other specialists while staying on my parent’s insurance plan. I was able to see a POTS specialist who knew Victorian hysteria was not the cause. I was able to see a mast cell specialist and get diagnosed with MCAS (Mast Cell Activation Syndrome). I was able to see a new primary care physician who specialized in thyroid disorders and who finally diagnosed me after over a year of my hair failing out, my energy failing me, and weight gain when I had been underweight my whole life, all of which male doctors had dismissed out of hand. I was able to start treating these conditions, which were contributing to my POTS symptoms and overall poor health.
Throughout all of this, I was able to graduate (on time and with a senior project more than twice the normal length). I was able to work at a publishing company and then a museum. I was able to get a book published. I was able to continue having insurance when I aged out of my parents’ plan. I was able to continue getting my medication and trying to get healthier.
I am still trying to get healthier, but my symptoms have worsened through no fault of my own. I am unable to work more than sporadic at-home freelance at this time. I am hoping that will change. However, a work requirement for Medicaid or losing Medicaid entirely will not change that. It will simply mean I lose my insurance and get sicker. I will become less independent, not more. I will become more of a burden, not less.
It is not a lack of motivation or work ethic I suffer from. It is multiple chronic illnesses. Some days I can’t stand without blacking out. Some days my heart rate can go from 50 to 150 in less than five seconds. Some days I can’t eat anything without getting sick and then my blood sugar plummets and I feel like I’m in a coma. I desperately want to do more and contribute to my community. But, like on a plane, I have to put my own oxygen mask on first. Please do not deny me the means to try and get better and continue living my life.
Please call your senators and urge them to vote no on this shockingly cruel and disastrous bill.