I have been blessed with relatively good health all of my life. I did go some years without health insurance as a professional student, but I came through that okay. The closest I came to chronic disease was reading about it. I read about people losing their homes and jobs as a result of the disease. It was horrible and I always voted for and supported any and all attempts for single-payer health care in the United States.
When I was told that I had metastatic breast cancer, the only things I thought about were keeping and losing my life, the next doctor’s appointment, when the next prescription needed to be filled, and–when it got bad–when the pain would go away. All through the year I shelled out my co-pays, money for the bus or taxis, and kept telling myself that it would be okay.
So now, after a year of shelling out thousands of dollars in co-pays and transportation (and holding a blue ribbon insurance policy for which I also pay dearly) I find myself on the precipice of financial ruin. My liquid savings has been depleted, I’ve fallen behind, and the promise of a “long and happy life” rings hollow.
It is easy to cut the things that can suck your money away: cable, eating out, concerts, and events. But they are also the very things that bring me joy at a time when I crave and need them the most. I can move to a cheaper apartment, but that will mean longer travel at a time when I can’t travel far (for work or for healthcare). And, yes, New York City is an expensive place to live regardless. But these choices are not the things that cut me off at the knees–it is the cost of health care.
I put away money in my FSA–as much as it will allow. But it will not be enough. And to sweeten the pot my oncologist has referred me to a nephrologist because of some lab values that worsen with each month. Great. One more doctor, one more co-pay, more transportation costs, and probably more prescriptions. More time away from the office. I never once thought of my health. Indeed, I tried to get out of going entirely. I fought with my oncologist, I accused her of seeing dust where there was none, I had physician fatigue and was sick and tired of doctors, but I had to cave. She saw dust, nasty dust. So I have to go.
And I am tired. So tired and exhausted. Every few days I take to my bed with the vapors and sleep and sleep and sleep. Hours of sleep. I despise being useless, yet I have no energy to do anything.
And all the while I keep accumulating more miles on the road to financial ruin. Unfortunately I am not the only human being on this road. It’s an endless road of financial refugees pushing forward as best they can while the enemy bites close to their heels.
How do we handle this, folks? What do you do to help ameliorate the crushing effect of financial hardship at the same time you’re trying to stay alive? Is it donations? Organizational assistance? And how many hoops must you jump through to satisfy the needs of an organizational paper trail while you are too fatigued to care?
No, doctors tell you a lot of things. But they don’t tell you everything.