Is it my sixth? My seventh visit to this doctor in nine months? I wish they didn’t make you sit in a high chair to draw your blood, I think, rummaging through my purse for something, anything, to fidget with. I gulp cold water from a paper cup and smile at the other people in the room as if to calm them down. They are never as worried as I am; my body has a mild phobia of needles, my blood pressure sometimes dropping until jagged stars invade my vision and the world goes black. Today, my heart has already been racing and my head light for a while, since my doctor told me we have exhausted our options in pill form and she is prescribing a weekly injection. This is good, maybe this will be the one that helps, my brain says. My body is gearing up to reject these future weekly invaders.
“Would you mind loosening this band? I’ve passed out before,” I ask the phlebotomist, trying to sound nonchalant.
“It’s a tourniquet. It’s going to be tight,” she snips as she relieves the pressure choking my arm.
It’s about the rudest thing that’s happened to me since I left Boston, but I guess I shouldn’t be too surprised. Even when your doctor is kind and patient, she conveys through her busyness, her degrees on the wall, her brusque responses when you venture an idea, that you as a patient should sit down and shut up. When it comes to managing your health, you are viewed more as a liability (prone to eat too many cookies or forget your meds) than as a partner; your familiarity with your own body, ability to read and research, and willingness to make lifestyle changes do not count for much at all.
The bloodwork goes smoothly despite my insistence on retaining consciousness. “We will get to work on your prior authorization with the insurance,” the doctor tells me on the way out the door. The injections are so expensive she will have to make a special plea on my behalf.
Two weeks later, I get a phone call: the insurance company will pay for the drug, the pharmacy says. My copay will be $200 a week, but the drug company might bring it down if I call them. I thank the lady and hang up. It’s been my best two weeks, physically, in the last nine months; at the urging of several friends, I’ve been taking turmeric. It costs five cents a day.
Even when we pretend to be objective about healthcare, the word means different things to all of us. My own feelings about doctors. His memories of the time he nearly died. Her mother, in the best nursing home they can afford. His kids receiving the mental health treatment, disability help, or asthma meds that help them function in an inhospitable society. Her brother trying to get clean again.
The last time the country debated healthcare, I was 19, my chronic illness was in remission and I’d never paid for a doctor’s visit; so “healthcare” was a bit of an abstraction to me. But I remember many conversations about all aspects of the healthcare system: we were concerned with the reasons healthcare was so expensive.
This time around, I hear only about who’s going to pay. It almost sounds as if lawmakers believe, if they get the right actuaries and accountants into the same room, some way exists to balance costs and benefits so most everyone will end up happy. But most of us know that’s not really true. And it is the vulnerable, the cash-strapped and the caregivers, who are losing sleep waiting for the verdict: will their families be counted among the “deserving?”
This time around, as families find themselves feeling powerless, I have been reminded at every turn how the healthcare system itself disempowers people. How patients are run through systems like widgets on an assembly line. How your doctor, your insurance company, and countless bureaucrats in between decide whether you receive treatment. How one’s various doctors and specialists make it difficult to share records, information, and ideas between them.
I am disturbed that we don’t, properly speaking, participate in “healthcare”; we have a system for disease-care, organ-care, but not for helping people lead good and happy lives. It is hardly acknowledged amidst the sterile walls and medical machines that our organs are connected to one another, let alone that the mental, emotional, and social spheres can impact our bodies as heavily as drugs.
I am frustrated that I have the option of trying dietary solutions to my own health problems only because I run in well-educated circles—that even though these options pose zero risk (unlike immune-suppressing injections), they do not merit mention by my doctor.
I am convinced we are not asking enough questions; for even if we found some way to pay for it all, our healthcare still would not be healthy, or holistic, or just.
There are philosophers who say that everything Americans do, we do to avoid thinking about death. Whether or not they are correct, most of us could agree that we are avoiding some hard conversations. For so long we have believed we could outsource the burden of considering these topics: the doctor manages our health, the Congress, our obligations to our neighbors, while the pastor answers moral questions and knows what to do when someone dies.
Some people in the gut-health and autoimmune-management communities (industries?) speak of a patient-led revolution: putting the parts of the body back together and empowering people to manage their health through their own decisions, relying less on drugs and more on lifestyle choices whose side effects are only good.
I hope that as we are re-examining healthcare, making our phone calls to Congress and our judgments of other political positions, we will notice that the experts are not the only ones who can make change in every aspect of our medical lives.
We can discuss end-of-life with our families to avoid unnecessary medical bills and mental anguish.
We can improve lonely seniors’ health outcomes by spending time with them.
We can pay more attention to how our diets make us feel.
We can share information with friends and neighbors and help people research their conditions.
We can redirect future tax savings to support programs that offer free medical or mental health care, make healthy eating and exercise more accessible, or treat drug addiction.
We can face questions like how to deal with pain and when to pull the plug in our churches and community centers.
We can thank science for its meticulous dissection of creation—while also recognizing that the mysteries of life lie beyond the reaches of repeatable experiments and double-blind trials. We can honor the gifts medicine brings—while calling out the ways the industry has concentrated money and power with a few.
We will help someone else to be healthier, because we know that our own health cannot be disentangled from theirs, any more than the trees of the forest could pull out their own roots’ from the others’, any more than the eye can say to the hand, I don’t need you. We, too, will be the ones who give care.