But when it comes to healthcare, goddammit, I can't fucking help it. I have strong — really, really strong feelings.
See, I have a pre-existing condition. More than one, actually: idiopathic thrombocytopenia purpura, and celiac.
Which, as of this afternoon, means if I ever leave Creative Loafing, I can basically never get healthcare again. It's a good thing I love it here, because they have excellent healthcare and I have not-excellent health. And so, as of today, CL, you pretty much have me forever.
See, when you have a pre-existing condition, you're, practically speaking, uninsurable. I mean, you can get insurance, but not for anything relating to the pre-existing condition, and not for any sort of affordable amount of money.
It wasn't that way when I woke up this morning, but up until President Obama passed and implemented Obamacare, it was that way my entire life, and now, I suspect, it will be again.
Immunothrombocytopenia means my white blood cells see my platelets as an infection, and they destroy them. Which means, untreated, I would basically be a walking bruise, because when I bumped myself, all my white blood cells rushed over to help me clot, but since I didn't ever have enough platelets, I'd get a big-ass bruise (that's the technical term, actually) that lasted for months. Also, when you have ITP, a car accident can kill you. Or a fall. Or, you know, walking around and bumping into things. I had my spleen out almost 20 years ago, after I got tired of people asking me if I was a battered wife (no) or if I was sleeping enough (yes, but I never felt rested).
When I was at my worst — when I was a pale, bruised ghost of a person sleeping 17-20 hours a day (this is how I spent my early 20s, FYI) — my mom, who worked in the medical field trying to get insurance companies to pay claims, fought for me. She called my insurance, battled with them, used technicalities, jargon and, if I know my mom, plain old German bullying, to get them to pay my claims and authorize life-saving treatments. Without my mom knowing how to deal with health insurance companies, I'm pretty sure I'd be dead right now.
But I'm not dead; she made sure I had care. She made sure my eventual splenectomy was covered, and that her only child would go on to have a mostly-healthy life.
So, I'm not cured — ITP never goes away — but I'm considered in remission. For almost two decades, which is actually a pretty good success. However, if I ever have a bleeding problem again, it's a pre-existing condition. And, if I ever have surgery — for anything — and I need, say drugs to help me clot during surgery, if the rest of the government agrees to repeal Obamacare, those drugs and part of my surgery — or, perhaps, all of it — won't be covered, because that's a pre-existing condition.
If you've followed my #BecauseGluten column, you know I also have celiac. My doctors believe the ITP resulted from undiagnosed celiac. But, for the purposes of this article, all you need to know is that if I ever have any stomach issues again, or any sort of immune issue, it's a pre-existing condition. If I get ulcers, or need an endoscopy, or go for my twice-annual iron infusions or monthly B-12 shots or any of other things that I do now to keep me healthy and, you know, awake more than a few hours a day and not dying of malnutrition, well, those all relate to the celiac, and, hey, that's a — say it with me — preexisting condition.
This is why I loved the Affordable Care Act (OK, OK, Obamacare). It eliminated the idea that insurance companies could decide not to cover any health issues that might relate to something that happened before they insured me. To people like me — which is to say anyone who has ever had a chronic illness — this was a huge lifesaver. Literally.
Which is why I have a lot of f-bombs tonight for our fearless leader and any member of congress who voted to "repeal and replace" the Affordable Healthcare Act earlier today. Just, really, please, assume that I've suggested they do something to themselves a lady would never suggest.
Why?
Because anyone who could vote the way they did either doesn't understand or — more likely — doesn't care what it meant to a mother to understand her only child would be able to get health care, after years of battling to make sure a pre-existing condition clause didn't kill her baby girl. They don't comprehend — or do not care to attempt to empathize with — the idea of what it felt like to wonder if you could afford to pay for treatment you needed to save your life.
They don't care if people die. If they did, they wouldn't have voted to repeal something that saved so many lives.
I've worked hard and I've landed at a company that not only is a lot of fun to work at, but also offers me excellent health insurance. And, as of this afternoon, I'm never leaving. See, that's the thing about pre-existings: if you have insurance right now and you keep it, insurance companies must cover you. If you change insurance, for whatever reason, they don't.
I would be remiss not to point out, too, that many, many people with chronic illnesses work hard and don't, for whatever reason, land at a company with fantastic insurance. Because yes, I've had some real "eat Spaghetti-Os and go without meat for a while and not in the healthy way" years, years where I worked my ass off no little or no money, and although I worked hard, there was a bit of serendipity involved in me getting a full-time gig at CL. Lots of other people won't get the opportunities that I had or be in the right place or say just the right thing in an interview, and, moving forward, that could mean a literal death sentence for them.
So, yeah. Thanks, Obamahaters. I'm here for the long haul, and, if I can help it, I'll never let you forget it.
Cathy Salustri is CL's Arts + Entertainment editor. Contact her here.
This article appears in May 4-11, 2017.
