Facing the Medical-Insurance Complex

Bodhi of Pain* (The Endometriosis Diaries, Part III)

nadia kaneva
Jul 25, 2018 · 9 min read

Before I was diagnosed with endometriosis, I struggled for years to find out what brought on my rare, but severe, pain attacks. During that time, I had been told so many times that there was nothing wrong with me that I had internalized this notion to a greater extent than I realized. As my symptoms got progressively worse, I continued to live with the old mental script for a long time. For instance, I found it inexplicably hard to request medical leave from the university where I work when I needed to have diagnostic surgery. Even after the procedure was scheduled, I kept dragging my feet and thinking of ways to squeeze the recommended 4 weeks of post-operative recovery into my one-week spring break. At the insistence of my husband and with encouragement from a few friends, I finally listened to reason and took the leave. Still, I felt like a wimp and blamed myself for being weak.

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As I explored these uncomfortable feelings, I slowly started to see how futile it was to guilt-trip myself continually. Still, again and again, I fell back into the same old pattern of thinking and I felt discouraged and confused. Would I ever be able to regain control over my life? Wasn’t all this the result of my own decisions and choices? What had I been doing wrong all this time that had put me in this terrible position? Would I ever feel good again?

Every time I spiraled out into self-doubt and questioning, my pain would get worse and the thought of wanting to end it all would come back. I knew this meant that I was in the danger zone, but I was determined to get better. So I kept dragging myself to my weekly therapy appointments, even when I could barely put a sentence together and had to spend most of the hour lying down and doing exercises to calm my anxiety.

Over time, I became increasingly curious about the triggers that brought on my repeated bouts of self-flagellation in response to my pain. I was trained to study social and cultural systems, so I used my analytical skills as a coping mechanism — a way to make sense of what was happening to me. I started to observe more carefully my interactions with medical and insurance professionals and, soon, I began to notice how the very system, which was supposed to help me get through this difficult time, was, in fact, stirring up my persistent feelings of inadequacy and helplessness.

I will call the elaborate system of health and disability insurance in America the “medical-insurance complex.” Its institutional, technological, financial, and cultural networks and practices determine the type of health care and social support one can get. I am no expert on how this system evolved to its current state, nor will I offer any political opinions about it. I am simply a woman who suddenly found herself at the mercy of this system because my life was invaded by chronic, debilitating pain.

In theory, the purpose of the medical-insurance complex is to help suffering people find help and restore their sense of well-being. That is what the system wants you, the patient, to believe. My health insurance company is running an advertising campaign with the tagline, “Thrive.” This word is plastered in bold letters on giant signs as you drive off the parking lot of the clinic I go to. If you visit the company’s website, the first thing you’ll see on the top is this:

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Reassuring, isn’t it? Naturally, the first thing I want to do when I’m feeling ill and in pain is to watch their bloody commercial. I used to work in advertising and I teach branding at the university. Honestly, I have no idea how this message is supposed to make me feel better. But that’s another topic.

In reality, the medical-insurance complex is an industrial and bureaucratic machine. It is designed to “process” patients in a way that produces acceptable “outcomes” at the lowest possible cost. The system doesn’t “think” creatively in order to deliver the best possible solution for your individual health problem. Forget about anything you might have seen on Grey’s Anatomy or House. At an HMO, you won’t see teams of brilliant, eager-beaver, cutting-edge doctors from multiple specialties working together on solving a difficult case.

In reality, the medical-insurance complex follows a series of routinized protocols, designed to keep costs down and move the patient along to a point where she is no longer the system’s problem. When you get to the end of the protocol, it doesn’t mean that your health has been restored. It simply means that the protocol has been completed. If you’re still sick and in pain, well, there is nothing more the system can do for you.

Case in point. After the diagnostic surgery, my daily pain returned and none of the pills I was prescribed seemed to help. My doctor suggested trying specialized physical therapy to address muscle tension and nerve compression in my pelvic floor. The insurance company authorized 20 sessions over the course of 12 months. The protocol didn’t allow for more. If the pain was still there after 20 sessions, there was nothing more the system could do for me.

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So, there I was, at the mercy of the medical-insurance complex, which I had managed to avoid for the better part of my life. I desperately needed help, but, just when I felt most vulnerable, I had to find the strength and the resilience to navigate the seemingly endless morass of paperwork, protocols, and phone trees that the system kept throwing in my face.

I felt anxious, scared, and small. Every time I had a doctor’s appointment, signed another form, or called my disability insurance handler, my pain would shoot up and my whole body would clench tightly like a fist. I did not feel reassured. I did not feel taken care of. And I was most definitely not thriving.

Eventually, I began to notice repetitive patterns in my interactions with the medical-insurance complex that exacerbated my anxiety. I’ve narrowed them down to three words, three ways in which the system was bearing down on me: naming, blaming, and shaming.

Even as I write these words now — naming, blaming, and shaming — I feel a swell of anger inside me and a tightening in my jaws. I need to pause and remind myself that I also encountered kindness and compassion along the way. I promise to write about that too, but first, I need to work through my frustration with the realization that the very system, which was supposed to help me and other women like me, was actually adding to my suffering. So, here we go.

When you enter the medical-insurance complex as a woman suffering from unexplained pelvic pain, you lose your name and your identity. As far as the system is concerned, you are an insurance ID number associated with a cluster of symptoms in search of a diagnosis. Without a diagnosis, the system does not know which treatment protocol to initiate so you exist in medical limbo and are subjected to exams, tests, and experiments with drugs until your condition can be given a name — in other words, until you get a diagnosis.

This does not mean that the system is in any great hurry to help you. For women with endometriosis, the naming process can go on for years. In my case, it took eight years from the first pain attack, when I passed out on the bathroom floor, to the day I received an email from my doctor saying that a piece of tissue she had cut out from inside of me during surgery was confirmed to be endometriosis. This was it. The naming phase was complete.

Because endometriosis is a disease for which, as of now, there is no cure, my diagnosis put me in the unenviable category of patients whose symptoms must be managed indefinitely. If the symptom management protocols didn’t work, it wasn’t anyone’s fault, because, you see, even the best doctors in the world cannot cure a disease for which there is no cure. The fact that my life seemed to be falling to pieces and I didn’t know what to do with myself was irrelevant from the point of view of the system. As one doctor told me, I had a “known cause of pain,” but there was no known way of eliminating that cause completely, which made it “difficult to be the patient.” I guess that last bit was her way of showing compassion.

The same doctor then went on to describe the finite set of treatment protocols that the system allowed for: painkillers, hormonal pills, a fixed number of physical therapy sessions, drugs that would put me in clinical menopause, or surgery that would remove part of or all of my reproductive system. None of these options sounded too good to me, especially because, as the doctor explained, none of them guaranteed that my pain would not return.

Having checked off every option on the list, she smiled and said, “Of course, it’s entirely up to you what you want to do.”

When you’re living with constant pain and your doctor tells you that it’s all up to you, it may seem empowering at first. After you’ve tried two or three or more of the treatments and the pain keeps coming back, it becomes increasingly hard not to blame yourself for making the wrong choices. Someone or something must be at fault, right? If it’s all up to you, doesn’t that mean that you are the one who’s to blame? Blaming by implication is one of the cruel tricks that the medical-insurance complex plays on patients. It wants you to know that, if things don’t work out for you, it’s not the system’s fault.

And then, there are the various flavors of shaming to which I’ve been subjected. A few of the most basic ones:

  1. Repeated dismissals of my symptoms as “normal.” For example, “Doctor, I’m bleeding 50 percent of the time!” Doctor: “Highly annoying. But that’s normal with this type of medication. Keep taking it.”
  2. Multiple mentions that pregnancy can delay the onset of endometriosis symptoms, even after I’ve said that I am not interested in having children. Plus, I’m 44. And I’m already in pain.
  3. Remarks about my age, weight, exercise habits, sexual activity… all seemingly offered as explanations of my symptoms, but with a slightly patronizing tone.

When you are already feeling like crap, it takes very little to get you to question your whole life. Am I too old? Too fat? Too sedentary? Too selfish? Too obsessed with my work? Do I have too little sex? Too much? Not the right kind of sex? Am I still a real woman?

Then, there are subtle or not-so-subtle rebukes for not following doctor’s orders or asking too many questions. If I take all the pills the doctor prescribes and I put up with the side effects, I am “compliant.” If I ask questions about the risks, or say that I want to try acupuncture and hemp oil to see if my pain could be managed with less medication, the doctor is suddenly in a hurry. After a few too many questions one day, she quips, “You’ll have to decide if I’m the right doctor for you.” In other words, put up or shut up, even though, “of course, it’s really all up to you.”

The worst kind of shaming I experienced was when dealing with the disability insurance company. I had to explain over and over why, although my surgery incisions had healed, my continuing pain made it impossible for me to go back to work. “Pain is a subjective symptom,” one agent told me. Nothing in my medical record “proved objectively” that I was in terrible pain, she said. Clearly, “the record” had the last word on how I was feeling. And, clearly, I should have been ashamed of myself.

I could go on…

I know that my experiences are not unique. I also know that the medical-insurance complex wants me, and other women, to believe that following protocols, even when they fail to help or they make us feel worse, is normal. Systems exist in order to normalize and routinize things. Sometimes normal is good. Sometimes routines are useful. But if the system is normalizing and routinizing the suffering of millions of women, there must be something wrong with the system. Unless we find the strength and resilience to speak up, unless we use our anger and our pain to face the medical-insurance complex, nothing will ever change.

*The buddhist concept of bodhi is commonly translated into English as “enlightenment” or “awakening.” It is believed to be the final stage on the path towards spiritual transcendence or Nirvana.

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