Anxiety has been all up in my business this week. My pulmonologist called last Friday to chat about some medical stuff. If you’re a chronic patient, you’re probably familiar with the game where something catches the doctor’s attention enough to mention it, but you don’t know how far the curiosity will go. Will follow-up tests yield answers or more questions? Will this become a “thing,” or will it disappear with all the other results-that-were-blips-but-never-became-things? Aaaaand if you’re not medically challenged enough to know what I’m talking about, good for you.

As a result of that convo, I now have unactionable items floating around in my mind while I wait for more information. There’s nothing I can do except try to forget about these things OR research them to pretend I have some semblance of control, which is generally a terrible idea. But my mind just won’t stop this week.

I started thinking about how many medical appointments I’ve been to since April, and that reminded me how impossible it was for me to work full-time due to cystic fibrosis. Between illnesses, appointments, and hospitalizations, forty hours a week wasn’t consistently doable. But for me, and others with chronic illnesses and disabilities, full-time work was almost a necessity to obtain health insurance prior to the passage and implementation of the Affordable Care Act (ACA)—or you could try to marry a person with health benefits.

Sadly, there are still many people who don’t understand the ACA and its protections—people who still equate the ACA, along with social security/disability insurance and Medicaid, as “not wanting to work” instead of, I dunno, something more compassionate, like “I’m fortunate my body works properly and hate that others’ bodies don’t.”

Here are two ways in which the ACA directly protects me:

• Prior to the ACA, insurers could discriminate against people with costly medical conditions (like CF), choosing to deny them coverage. Now I can obtain coverage on my own without needing an employer-sponsored insurance plan (i.e., without working full-time).
• The ACA prevents insurers from setting annual and lifetime cost limits on benefits, meaning they can no longer just stop paying if you hit a certain dollar amount, leaving you to foot the bill—and probably go bankrupt. (Note: The newest CF “miracle drug” cost $370K a year.)

Let’s pause for a moment to reflect on the fact that health insurance in the U.S. is tied to employment—and the very people who most need medical care are the same people who may not be able to “earn” it through traditional full-time employment.

I want to cry.

This line from today’s morning journaling pretty much sums it up: “I’m putting things on my plate sooner than they need to be.” This week it feels like my plate is overflowing and it’s not even nearing mealtime.

I’m preemptively thinking about what will shake out with my latest health stuff. I’m preemptively grieving about what Medicaid cuts would mean for people with chronic illnesses—1 in 3 adults and 50% of children with CF get their health insurance through Medicaid (WHY AIN’T THOSE KIDS WORKIN’?). And I’m preemptively anxious about conversations I need to have with people who want to spend time with me yet don’t actually value my life.

(I DEFINITELY don’t have room on my plate to start going on about the sad state of medical research and advancement. Hint: It’s heartbreaking.)

It’s been a hard week. I don’t need your sympathy; I need your ACTION. Start by filling out this VERY SHORT form prepared by the Cystic Fibrosis Foundation: https://act.cff.org/uWMczUS.

And if you love people who face daily health challenges, they might not be ready to say this, but I am: You know what sucks more than having a chronic illness? Feeling unsupported / unseen / unloved by people who say they “want what’s best for you” while making your life harder. REMEMBER ME WHEN YOU VOTE.

*imagine me smashing a plate*
*now I’m stomping on it*
*now there’s glass in my foot and I need medical attention.*