As if living with an invisible disability weren’t exhausting enough, many of us have to fight our insurance companies to get the treatment we need. Because hardly anyone can afford treatments at today’s prices, our insurance companies often make the decisions about what care we receive. That decision should never be made by an insurance company, but that is today’s reality.
My injuries left me unable to do a full-time job with insurance benefits. If not for the Affordable Care Act, I wouldn’t have access to insurance at all. With as little as a private policy under the ACA pays, I question the value of having insurance at all, but I keep it because of the threat of catastrophic illness or injury.
Most of my treatments are considered “alternative” and are not paid at the regular doctor’s rate. I see a chiropractor, a massage therapist, and an acupuncturist, all endorsed by my physiatrist (long-term trauma care and pain management specialist).
My massage therapist is out of network, but she knows my body better than anyone, and the benefit paid for massage therapy is too small for it to make a difference if I switched to someone in-network. I submit my receipts to apply toward my deductible, but I’ve never received any benefit for massage therapy. My therapist gives me a compassionate discount because of my situation, and I tip her because of hers. (It’s always the people with the least who give the most to help others.) I used to go twice a month, but lately I’ve only been able to afford to go once a month. I always have a rough night after a massage, because I let it go too long and I have intense residual pain before I start to feel better. I need it twice a month. If money were no object, I’d go once a week.
I have no acupuncture benefit. I go to a sliding-scale clinic and pay $40 a treatment. It makes a huge difference in my energy and pain tolerance, so I continue going twice a month; if you space it out longer than that, you get less benefit from it. I would go once a week if I could afford to. My acupuncturist also practices Chinese medicine and some of her practical tips based on that philosophy have helped a lot.
I need chiropractic adjustments twice a month. That’s how often I’d continue going if money were no object. Lately I’ve had to space it out to every 3 weeks because my copay rose from $40 to $56 per visit (basically, insurance pays nothing after chipping in a whopping $16 for my first 12 visits of the year). In 2013 I received a letter from Group Health (now Kaiser) stating that because I had reached a plateau in my recovery, they weren’t going to pay toward any more chiropractic care.
My physiatrist wrote a letter stating that if my chiropractic care were cut off, I would backslide rapidly. The care was essential to maintain my current function. It took 3 months of arguing to reinstate my chiropractic benefit.
Those of us with long-term care needs are losing the fight for the care we need. We’re making do with less, and some of us are dying—look at the rash of recent deaths from diabetics rationing their insulin. When our issues are invisible, we often have to justify our need for the care before we even worry about paying for it.
I spend roughly 30 percent of my income on out-of-pocket medical care, getting about half the care I need for optimal function. I suspect I’m one of the lucky elite who even get that much.
Last week I attended a presentation on the current state of health care in the US at the local university, put on by a friend whose granddaughter attends the school. My friend was advocating for Medicare For All. I support this with some trepidation; I worry that I’d have the same issues justifying my care needs with a national health service as I do with private insurance, but it would still be an improvement, at least for injuries like broken bones and acute illnesses like flu or food poisoning.
The presentation opened with an invitation to tell our stories. I told my story of being hit by a car on my bike, my long recovery, running out of insurance money on both auto and health policies, my ineligibility for disability benefits, my bankruptcy, and selling my condo and moving to a tiny house to live more affordably. These young people listened to my story and mobbed me after the presentation to ask me about living in a tiny house. Still, I think they took away more than that from the experience and they’ll be part of the solution going forward. Even at their young age, some of them had harrowing stories to tell.
We need to bring our stories out into the light if anything is going to change. What does your fight look like? I have a sinking feeling I’m going to hear much worse stories than mine. After you tell your story here, please tell it to your elected representatives. Our “first-world country” needs to do better.