It's a common mistake almost everybody makes, the assumption that everything is going perfectly when your friend keeps a smile on their face. Often with me people assume I'm healthy because I've managed to care for my son by bringing him to and from school, playing with him in the afternoon, attending basketball games. But these moments reflect the best of my life. I have stage 4 Hodgkin's lymphoma. I've had 2 bone marrow transplants and I've lost two-thirds of my lung capacity because of treatment. I'm doing people a disservice if I'm leading you to believe that what I do, all the medications, surgeries, and therapies, and yes, the bills, is easy and I'm not crumbling inside.
I've never written about some of my most desperate places, until now. Soon after diagnosis 4 years ago, even though I was "fully insured" with health and disability insurance, we quickly realized how little the companies would actually cover. When I began to see how it could destroy both our financial lives, I tried to legally divorce my husband. In the U.S., the sick can't afford to remain married.
Being unmarried, I would be destitute and have the option of Medicaid. My husband would keep the assets. Our life wouldn't change. We'd remove a legal label. No hospital or insurance company could ever take our home. We could survive off my husband's credit with assistance from my parents.
It's an option few people will admit to entertaining, divorcing for health care, anymore than they'll admit they became married for health insurance. But the guilt of bringing sickness into the family, the knowledge that, if not for your disease, life may have gone as planned and you may have had the happily-ever-after you dreamed of begins to weigh heavily on the individual and the couple. Resentment felt towards the sick spouse resonates between the two until the fear of destroying the financial future of someone you love bears down on you as much as the disease itself. Then you begin to wonder where you'll draw the line in care or how much treatment you should receive without hurting your families' bottom line.
It's an easy jump to consider divorce from here, "why bankrupt two when only one needs to be affected?" Divorce starts looking good now. It offers a glimpse of hope for a stress-free financial life while fighting a merciless disease. Of course, you know the cries of fraud you'll hear from people outside your situation, but few health care providers will be "tsk-tsking" your decision. They've probably encountered this situation before, especially when they see senior citizens forced to drain a lifetime's worth of savings until Medicare or Medicaid kicks in. They know better than most that the system as it stands is a black hole for the middle class when catastrophe happens, like it was with me.
But that choice of divorce wasn't for me. We stayed married. For whatever reason, maybe my husband didn't like the lie, maybe he really wanted to stay together, or maybe he was scared once the divorce went through I'd go "ha-ha, I'm out of this now" and run away. So what happened?
In the first year alone, I blew past a $2500 deductible with a single biopsy and then racked up $3600 in co-pays. At some point, my insurance company tried to stop covering PET scans and we had to put the PET scans on credit cards. With each relapse, each new treatment has forced us to spend tens of thousands of dollars to go to Boston or New York or Cleveland. And just when you think you've hit your very lowest, you get a hook to the jaw from your blind side. In my case it came from my long-term disability company, threatening that anything I've received for my dependent will need to be repaid. Thousands of dollars I already spent just trying to stay alive.
So yes, we stayed married. We did the right thing so they say. But our nation's health care system didn't do right by us.
This post was adapted from a recent piece in Baldie's Blog.