What it’s like to be without health insurance and afraid that you have a chronic illness

According to the Center for Disease Control and Prevention, the number of uninsured people younger than 65 in the United States is at a record low of around 10% thanks to the Affordable Care Act. As we’re all painfully aware, however, that statistic is subject to change given our political climate and attempts to repeal Obamacare with or without a replacement plan. Depending on the outcome, literally millions and millions of people could lose their health insurance.

Right now, unfortunately, I’m already part of that 10.4% of uninsured young people. At 25 years old, I find myself with health concerns and no way to pay for care.

It was never my intention to be uninsured, but it happened. I haven’t been on my parents’ insurance since I was in high school. After retiring from their jobs, they both lost their employer’s insurance and picked a new plan that didn’t include dependents. Once I’d graduated college, my student insurance plan expired and I soon moved abroad to teach English. I had health insurance while I was working, but after ending my classroom job, I didn’t have it for the following year and a half.

Working as a freelancer means buying your own insurance plan, but I thought I could get by without it.

At first, it seemed like I could. I don’t take regular medication, not even birth control. I was living abroad in places where medical care was affordable. And because I’ve made such little income over the past few years, it seemed more economical to pay for care upfront than to pay for insurance.

I’ve been relatively healthy, except for a mysterious recurring sickness.

I call it chronic tonsillitis, but without tests, I can’t be sure what it is exactly. But whatever illness I have, it seems to always rest below the surface, waiting for a chance to erupt.

When I was abroad without insurance, I didn’t really suffer economically. When I got sick in Bangkok, my medical bills at the emergency room in a private hospital totaled $45. Tonsillitis in Buenos Aires cost me $20 for the consultation and $10 for the medication. In Cuba, it was a “donation” of $20 to the doctors who came to my Airbnb, and $3 for the medicine.

I’ve been prone to strep throat and tonsillitis ever since I was a child, but for the last three years, my flare-ups have become much more frequent – about four or five episodes a year. Each time, I’m left debilitated for multiple days. I’ve missed work, social events, and planned vacations. I have to be especially careful about my sleep schedule and diet.

The flare-ups have become a big part of my life. I can feel when they’re about to appear, and I know what I have to do to recover. In the past, this was something that — as annoying as it was — could be taken care of with antibiotics. In these other countries, when I needed care, I could access it and afford it. While I was concerned about my health, I never placed enough value on it to put it first. For three years, I’ve spent all of my income on experiences and travel, leaving little for unexpected medical costs.

Now I’m back in the United States, and whatever my chronic illness is, it has gotten worse.

I fear that there may be something really wrong.

Since returning here, I’ve unsuccessfully tried twice to get healthcare through the ACA. (Somehow, required paperwork didn’t reach my house, and therefore I didn’t submit it on time, and I was denied — twice). I’m on my third try, and crossing my fingers the insurance will come through soon.

Our society emphasizes working hard and simultaneously having a great social life, which doesn’t lend itself to a culture of valuing downtime and sleep.

People tend to assume I’m lazy, but if I don’t sleep for approximately 10 hours a night, my muscles tense up and I feel my throat tighten. My chest frequently feels heavy, and deep breaths cause constriction in my lungs.

I used to be a fitness instructor, and now I’m out of shape and can barely finish a standard 45-minute workout. This illness has taken away the benefits I used to feel from exercising, and it’s now threatening to change my active lifestyle. I feel lethargic and exhausted, but I still want to have my social life.

Admittedly, living without health insurance used to make me feel like I was teetering on the edge of irresponsibility and savviness. I knew it wasn’t smart, but I liked how I managed to finagle “the system.” Now that I’m back in the United States, I have to face the reality that living without health insurance is no longer an option.

I want to go to a doctor, get tests done, and stop living with the fear that, at any moment, I’ll have to stay in bed for days. This feeling isn’t, and shouldn’t be, normal for a 25-year-old with an otherwise great record of health.

But without insurance, I can’t fathom the out-of-pocket costs I’ll endure, leaving me unable to pay for rent and groceries. Even with most Americans insured, the cost per person for health care surpassed $10,000 in 2016.

This sickness could be something serious, or it could be simple and easily treatable — I just want to be able to know.

So in the meantime, I’m waiting for the day when I can go to the doctor with insurance — when I can avoid the copays, exam costs, and medicines priced for hundreds of dollars — so that I can, eventually, feel healthy again.