I'm sick, and I will be for the rest of my life. Knowing I won't be denied the insurance I need matters
Dear healthy people,
It’s great that you’re deriving intellectual pleasure from debating Obamacare. I love that this theoretical dance you’re engaged in has no repercussions to you, a healthy individual. I would love to join you some evening for a spirited discussion on the pros and cons of healthcare reform. Maybe over a glass of wine? Heck — over two or three glasses of wine. I’d love to lean forward, my arched brows furrowed, my full lips purple with the stain of a good Zinfandel, and throw out statistics and well-crafted one-liners about the plight of the uninsured, the underinsured, the sick. Those poor, poor sick.
But I can’t.
I can’t because it isn’t theoretical. I am sick. I’m so sick I can’t drink. I can’t drink and I can’t eat half the things a normal person eats and when I hear the word “Obamacare” hissed in snide derision I want to put a golf club through the windshield of the nearest Mercedes-Benz.
I’m 33 years old. I was diagnosed with an autoimmune disease called ulcerative colitis when I was 26.
Ulcerative colitis isn’t a disease people like to discuss. Most of what we experience is so embarrassing that many of us don’t tell people what we’re going through. We might tell you we’re “sick,” or “under the weather,” but we won’t tell you how bad it is. We won’t tell you we’ve had constant diarrhea for days, weeks, months on end, that we’ve been throwing up stomach acid, that we can’t eat anything but bagels, and that our joints ache so badly it’s hard to sleep. We won’t tell you how we’re wearing adult diapers under our clothes. We won’t tell you that getting in the car and driving three blocks away is the only activity we can do in an entire day.
But you know what we will tell you? We have to have insurance. We need healthcare and support because ulcerative colitis is a lifetime sentence. You know what else it is? A preexisting condition. Since receiving my diagnosis I have lived in fear of losing my insurance because if I let my insurance lapse, and Obamacare fails, I won’t be able to get it again. Ulcerative colitis and her sister, Crohn’s disease, are up there in the echelons of Scary Diseases Insurance Doesn’t Like to Cover.
I get it, I do. Some of our drugs cost a ton. It’s likely we’ll be hospitalized here and there. And many of us can look forward to bowel resection surgery or colon cancer. We’re expensive and we stay expensive for our entire lives. That’s the sticking point with chronic illness like Crohn’s and colitis: We’re sick but we just keep on living. We just don’t die fast enough.
If the health mandate stays, then the preexisting condition clause goes away. Insurance companies have to take everyone — even me. Lose the mandate and I’m right back to worrying about my care.
In truth, I think Obamacare doesn’t go far enough. My family is still coughing up $900 a month to insure the three of us, since my husband and I are self-employed. That’s pretty unsustainable. But at least the current plan includes a provision that insurance companies have to take me. I may have to pay ridiculous sums to keep my insurance, but I’m not going to live in fear of being dropped.
The last thing a sick person should have to worry about is how to pay for their care. The last thing the parent of a sick child or the child of a sick parent should have to worry about is how to pay for care. People should not have to choose between food and medicine, losing their house or losing their loved one. Let’s hold onto Obamacare as a stopgap, but let’s also work toward the goal of universal coverage.
For those of you who think of the healthcare reform debate in theoretical terms, I warn you: Your day is coming. Sure, you and your family are healthy now, but you might not be tomorrow. Sickness can come out of nowhere and knock your world upside down.
You’d better hope you have decent coverage. You’d better hope you’ve won the genetic lottery and you’ll never find yourself sitting in a flimsy hospital gown on a sheet of wax paper, staring down at your unshaven legs while a doctor tells you you have a golf ball-size tumor in your head or ulcers lining your intestines. You’d better hope Obamacare covers your theoretical ass.
Cedar Burnett is a freelance writer and toddler wrangler living in Seattle. She is currently working on a book about living with ulcerative colitis. More Cedar Burnett.
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