Totally Burned Out

I just read an article in The New York Times, "I Am Totally Burned Out: Patients Watch Health Care Debate with Dread," that really resonates with how I'm feeling lately. Well, how I've been feeling basically since November 9th, the day after you-know-who got elected and the world seemed ready to fall apart, go to hell, or both. That may be a bit dramatic, but hey, the stress is real.

The erratic ups and downs regarding the status of the Affordable Care Act (ACA) right now are not only stressful, they're exhausting. And anxiety-inducing. Terrifying, to some. No, terrifying to many, I'd argue. I'm one of those people, one of the pre-existing condition patients with a very expensive chronic illness who is stressed out, exhausted, anxious, and terrified of what's going to happen to the ACA and my own health care in the near future.

One minute we're (those in a similar boat to me) happy and relieved, hearing the news that a bill to repeal Obamacare didn't pass. Whew, we're safe! But then, seemingly the next minute the politicians have cooked up something new in order to drag this game out even longer, and once again I'm fearing that my healthcare will be taken away--Medicaid, in particular. I qualified for Medicaid a year ago, and since then it's literally been saving my life. The thought of losing it is genuinely frightening.

According to The New York Times article, "Millions of Americans feel held hostage to Washington’s wrangling and, consequently, to their own inability to control critical matters in their own lives." This statement is spot on. I absolutely feel as though I'm being held hostage in a sense, never knowing for sure what's going to happen, what I can rely on, or prepare for. Will everything be okay or should I prepare for the worst? Do I need to flee the country? The lack of control this congressional "ping-ponging" is causing is affecting my life, and the lives of so many others, in hugely stressful ways.

Some people have begun to stockpile their medications, out of fear of losing coverage and not being able to afford them out-of-pocket. Some are either postponing or rushing into major medical decisions, like surgery. Many people's lives, where they live even, are hanging in the balance, waiting to see what their healthcare fate will ultimately be. Will they have to change jobs? Move to a different city? Move to another state? It's, well, nuts when you think about how many lives could be potentially ruined based on the repeal and/or replacement of the ACA.

Politicians are making a ridiculous game out of the fate of U.S. healthcare and the risk of millions of people losing crucial health insurance. But it's not a game to us patients. Lives have the real potential to be destroyed, with the effects hurting entire families and communities and society in general for years to come. Maybe that sounds a bit dramatic, but I don't think it really is.

The number of people with expensive, chronic illnesses and conditions is also growing at an alarmingly fast rate. Going without necessary medications or treatment has bleak repercussions with death as a worst case scenario. If cancer patients can't qualify for health insurance and can't afford to pay for chemotherapy, surgery, and other medical expenses, what do you think will happen to them? This is definitely not a game.

According to the Centers for Disease Control and Prevention (CDC), the statistics on chronic illness in the United States are pretty staggering. As of 2012, about half of all adults—117 million people—had one or more chronic health conditions. One in four adults had two or more chronic health conditions. Seven of the top 10 causes of death in 2014 were chronic diseases, and two of these chronic diseases—heart disease and cancer—together accounted for nearly 46% of all deaths.

Last but not least on this list, according to the CDC's websitearthritis is the most common cause of disability in the United States, with 54 million adults having a doctor-diagnosed form of arthritis. There are millions of others suffering from undiagnosed forms of arthritis as well.(Reference:

So, yes, a lot of people's lives are at stake--and the stakes are high. How should we handle this rollercoaster ride without totally losing our minds in the process? Turn off the TV? Block everyone/everything on Facebook and Twitter? In this day of media sensationalism, social media saturation, and daily bombardment by news headlines, it's really difficult if not impossible to shield yourself from what's going on with the fight over healthcare.

I'm not sure what's the best thing to do, honestly. My mother has been glued to CNN lately, having daily mini freak-outs about all of the updates and "BREAKING NEWS!" I tell her she needs to take a break from it or she'll really lose it, but she adamantly comes back at me with: "We have to stay informed of what's going on! We have to stay on top of it!"

True, I believe we as patients and citizens of this giant and powerful country of ours do need to stay informed about what's going on in Washington and in local politics as well. However, I don't think it's worth it or wise to get obsessive to the point of having real anxiety attacks--which is what happened to me for about a month or so after the election. I was watching the news on TV constantly as well as joining Facebook groups and tweeting up a storm on Twitter, among other things. I finally stopped for a minute and realized, Oh wow, I think I'm actually having physical anxiety symptoms because of the election and what's going on in politics. This was new for me. I made a conscious choice to back off a bit, and I'm glad that I did.

The healthcare debate, however, feels like it's something I shouldn't back away from. And I have been getting more involved and informed recently, which I think is good and necessary. My stress level has also been steadily rising, though, and that's not good. I'm not sure how to best handle this tricky and emotionally taxing situation. What I do know is that I don't want to end up totally burned out and therefore unable to have a voice or help out in the fight to protect myself and my fellow patients.

How about you? Are you burned out? Are you energized and motivated instead? I'm very curious to know how others are feeling and how they're handling the dizzying tennis match being played with our health and our lives.


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