Not my actual ducks.

It’s the morning of January 12, and I just woke up to a world entirely changed. It’s not that I wasn’t expecting it, but the Senate’s repeal of significant portions of the Affordable Care Act still hit me like a punch to the (rather delicate) stomach.

You see, I’m one of the 20 million people who gained health care coverage through the ACA, and it’s the first time I’ve been independently insurable in my entire adult life. As a young woman, I was diagnosed with Crohns’ Disease, a condition I have struggled to manage for the following 3 decades, through an ongoing cycle of terrible flares, emergency room visits, hospital stays, and slow recoveries. I have more medical bills than I will ever be able to pay.

Without the ACA, I am uninsurable- or at least, the insurance has never been within the range of what I could manage as a working class woman and single parent. The last time I tried, I was quoted a minimum of $800 a month, and the plan wouldn’t have covered my entirely necessary daily meds.

Here’s what the ACA has meant for me: I’ve had annual checkups with both my primary care doctor and a specialist for gastrointestinal disorders, an annual pap smear and breast exam, and most importantly, regular and ongoing access to the medication that makes me able to hold down a job. I haven’t had a single significant flare of the Crohns during this time, largely due to regular checkups, better medication, and the annual colonoscopy that I’m required to have.

Without health insurance, I once ran up $80,000 in medical bills in less than 3 months, when a flare turned into a terrible abscess and then a lengthy hospital stay. Friends had to care for my child, and I was unable to work for months. When I did occasionally get access to the care and medication I needed, it was almost always through the public clinic system- a system that always assumed I didn’t have a job (I did), would desperately accept any time or place for a doctors appointment, often many months in the future, and only offered me the lowest possible tier of medication for my condition, to which I am allergic.

Like most folks with chronic diseases, I learned how to manage. When I had medication, through a combination of freebies from the clinics and assistance for indigent patients through pharmacy companies- I hoarded it, saved it for the times when I was terribly in need, and tried to manage minor flares without. I went to the emergency room when I had no other choice, and strived to exercise, eat well, and do anything else that supported my general health. Despite all of this, I was often quite ill.

For the last 3 months, I’ve been taking half the dosage that maintains my health, tucking away the rest for what was clearly coming. This morning, I called my doctors and made appointments for all my annual care, in hopes of getting those appointments through before my insurance is cancelled. I called in a refill of my medication, another precious bottle to tuck away in the cabinet for times of need. I’m encouraging my friends: writers, artists, working parents, and other uninsured contingent academic labor like myself, to get their ducks in a row. We are doing all the right things- but it likely won’t be enough.

I know that the ACA was never perfect, but for me and my 20 million friends, something was always so much better than nothing at all.