From Maggie McBride's Blog
I was diagnosed with epilepsy when I was 13 years old, but the first time I ever saw epilepsy referred to as an “invisible disability” was when I was applying to graduate school. The phrase baffled me. Since I had no immediately apparent physical challenges, I suppose it was easy for people to write epilepsy off as “invisible.”
It’s never been easy for me to do the same.
I see it in the six pills I take every day. It’s evident every time I wake up with paramedics hovering over me. It shows up in the black eyes and bruises that surface a few hours after a seizure, the byproduct of being unconscious before I fall to the ground, unable to find the most practical place to have a seizure. It’s in every medication label as I carefully select the over-the-counter drugs for my allergies, cold, or flu that won’t interact with my anticonvulsants. It’s visible in the flash of worry in my parents’ eyes when I tell them I haven’t been sleeping well, a common trigger for me.
As a result of the looming specter of a seizure that’s always hovering nearby, health care was always an immediate need and a constant source of anxiety, a departure from several friends I had that were healthy, working part-time jobs, and simply had to wing it and hope they never got sick or hurt. I remember the days before children were kept on their parents’ insurance until age 26: I helped pay for my COBRA coverage in college, balancing a full time courseload and a waitressing job. The opportunity to re-enroll on my father’s company’s plan occurred in 2010 or so, a policy that set the stage for what would later become the Affordable Care Act.
When President Obama talked about the greater picture of the ACA, it seemed like a lofty goal, especially to a young person all too familiar with health care bureaucracy and the industry’s desperate, frazzled dedication to nickel-and-diming every patient who walked through their doors. A world where I could select my own reasonably-priced insurance plan without being bound to a full-time employer seemed out of reach.
In 2012, I took a full-time job at a small company run by a family of staunch conservatives, one of whom referred to President Obama as a “Muslim terrorist” with some degree of regularity. I was fortunate to still be living with my parents, because the health insurance provided through my employer was terribly expensive. The premium alone soared over $360 a month, with prescription coverage only available as a percentage rather than a flat copay (a health insurance mistake I will never make again). The medication I needed to keep my epilepsy in check was expensive. Covering only a meager percentage of it added astronomical costs every month. Between my loan bills and medical expenses I was just barely able to squeak by.
I felt relief when the Health Insurance Marketplace opened in 2014. Have you ever gotten something great from someone a lot of people hated? I’ve yet to forget the euphoria of telling the company’s equally bigoted HR person to cancel my insurance plan because a “Muslim terrorist” had helped a girl out.
Now, the very provisions that made it possible for me to go to graduate school and to unbound myself from the soul-crushing cycle of clinging onto low quality employer-provided health insurance are all at stake under our current administration and its mutated version of the Affordable Care Act, called the American Health Care Act (AHCA). I’m lucky to live in New Jersey, where customers with pre-existing conditions always had protection against discrimination, but what about the estimated three million other people in the country with epilepsy, many of whom have it worse than I do, but not quite badly enough to qualify for disability? It seems that those that forged the AHCA think epilepsy is invisible too and should stay that way, simply existing as a wraith undeserving of the medical attention or carefully prescribed concoctions necessary to keep it under control.
Make no mistake: without pre-existing conditions clauses, people will die. They won’t all have “invisible” disabilities either. They’ll be, among others, people with physical challenges, mothers-to-be who fall prey to any of the many potentially fatal complications in a pregnancy, or those with chronic ailments slowly snaking around their nervous systems. No matter how evident their medical conditions are to others, I can assure you that their families and friends will not be silent, and they will not be tucked away. They, like me, will be loudly clamoring for the humane treatment of everyone, whether their afflictions are already present or will surface in the future.
We can only hope that our legislators will be similarly-minded, because this is a matter of life and death.
-Maggie McBride, NJ 4th District Constituent