Part One: Prelude
Unknowing
Much of my life over the past few years has been consumed with a single, urgent question: what is wrong with me?
In setting out to tell this story, I’m acutely aware that it’s going to sound like a medical mystery narrative. It’s going to read a little like a treatment for an episode of House, M.D.
Because of this I know that as you read this you’re almost certainly going to have advice for me. You’ll have theories about what’s going on with my body and you’re going to have advice for me about how to navigate a massively dysfunctional healthcare system.
That’s great, go for it. I’m all ears.
But know that while diagnostic questions make up the raw material for this story, it’s not really what the story is about. The real subject here is epistemological. Which is to say that it’s about how we come to know what we believe we know about ourselves. It’s about what happens to us when we can’t make sense of our own experience. It’s about the difference between how we define ourselves and the ways in which we are defined by others. And, more than anything else, it’s about what happens when our own capacity for definition fails us.
By the end there will be some answers. But inevitably those answers will raise a whole series of new questions. Because just as the process of assigning a diagnosis gives rise to impossible dilemmas, so does the process of living with one. And in the end this is a story about living in a state of unknowing.
Starting points: five diagnostic dilemmas
I have been unwell for at least two years, and I have not been able to get an answer to that seemingly simple question: what’s wrong?
It’s difficult to pinpoint the precise starting point for this story. There are many symptomatic markers, but in the absence of a clear diagnosis none of them point to a reliable starting place.
A first diagnostic dilemma: when does an illness begin?
I’ve often wondered if it didn’t start as long as four or five years ago, when I began noticing a gradual decline in my sexual functioning. My libido was dropping, and I began experiencing erectile dysfunction.
Because I am a psychotherapist, I naturally turned first to psychological explanations. In addition to being a clinician, I’ve been a patient in some form of psychotherapy for most of my adult life. I have a history of anxiety and depression once acute but at this point largely under control. There were current stresses that seemed like they could be causing the problem, not the least of which was the fact that my wife was publishing a frank memoir in which she openly discussed her past sexual history. That would be enough to put many men into a sexual crisis. So it seemed like the logical place to start in the search for answers.
Diagnostic dilemma number two: how do you distinguish between psychological and physical causes of an illness?
There was a part of me that really wanted the problem to be psychological. Because that would mean, in some sense, that I was in control of it. I knew how to do the emotional work, I felt confident that if that’s where the problem was, I would be able to work through it.
So I dug in. Three more years of intense work with a very good and very expensive individual therapist (one outcome of years of having done years of psychotherapy is that insurance companies treat any mental health diagnosis as pre-existing symptoms and refuse to cover it), in conjunction with the on-going marital therapy my wife and I were doing with another very good (and equally expensive) therapist.
Inevitably, as I did this emotional work I re-encountered parts of my psyche that were informing my current sexual experience. I faced it all head on. By this point in my life this was very familiar terrain. In fact, I was discovering that after years of work the charge had largely gone out of my past trauma. I could directly face the experiences which had affected me so negatively in the past. I could acknowledge the pain without feeling overwhelmed by it.
To me that has always been a pretty good definition of mental health.
But something didn’t fit. Because no matter how emotionally clear I felt, I was still a mess in bed. I could rarely maintain an erection for more than a few minutes and often I couldn’t get one at all. Even worse, the energy of desire itself was continuing to drain out of me. Left to my own devices, sex wouldn’t cross my mind at all for days or weeks. And even in those rare moments when I felt a clear, strong, psychological desire, the physical problems remained.
Finally, reluctantly, I went to my physician and described what was going on. He said, in effect, “welcome to middle age,” as he handed me a prescription for Cialis.
Diagnostic dilemma number three: how do you differentiate the onset of illness from the processes of normative development?
Cialis worked inconsistently, which proved to be a worse experience than having it not work at all. The same with Viagra and Levitra. And the more I understood about the erectile dysfunction they were designed to treat, the more I understood that there was no reason they should have helped. Whatever was going on with me, it wasn’t a blood flow issue. It was something else.
I began to think back to my medical history. In 1985 I had a bout with testicular cancer. I had a tumor on one testicle which was removed. After that I’d spent six weeks receiving a heavy prophylactic dose of radiation. Was that the real starting point? Twenty-three years earlier?
Diagnostic dilemma number four: how do you distinguish between the recurrence of a pre-existing condition and the onset of a new illness?
(This is not just a medical question, of course. It’s a reimbursement issue, as I discovered during the original cancer treatment, none of which was covered by my insurance because my doctor had observed in his notes that I had discovered the lump prior to being enrolled in my current insurance plan.)
After the surgery and radiation, I was a compliant patient. I followed up on all my post-surgery check-ups. And I was given a clean bill of health. But decades later as I began looking into the research, I learned that there could be long-term delayed consequences of both the cancer and the radiation. I had to wonder if that wasn’t the cause of my problems. I pressed my doctor to check my testosterone levels and to provide me with a referral to an endocrinologist.
The endocrinologist verified that my testosterone levels were low. (“Inadequate testicular functioning,” were the depressing words he used as he diagnosed me with the equally depressing word, “hypogonadism.”) But, he said, what concerns me more are your thyroid levels.
Hypothyroid. A second diagnosis, one I’d never considered even though I’m well aware that hypothyroidism is a common physical cause of depression, not to mention that it’s bound up with a variety of problems with sexual functioning.
He put me on both testosterone replacement and a thyroid medication.
This left one question unaddressed: were these two diagnoses related, or did they represent different aspects of the same underlying issue?
Diagnostic dilemma number five: how do you determine whether you are dealing with a single syndrome as it evolves over time, or whether are you looking at two or more co-occuring conditions?
There was no way to answer this question, but I allowed myself to hope that this diagnosis and treatment was going to turn things around for me. I even let myself imagine that it might address problems that I’d been enduring for decades, like the occasional bouts of low-level depression that I had resigned myself to living with. I was genuinely hopeful that things were going to get better.
A final dilemma
Most of what I’m describing here happened a little over two years ago, in the spring and summer of 2008. I added the new medications to the statin and the antidepressant that I was already taking. I started scanning myself for improvements. And at first the medication did seem to help…a little. I felt a bit more energy, a bit more sexual interest. I tried to leverage that small feeling of improvement into something more. I tried to convince myself that the drugs were helping more than they actually seemed to be.
What’s odd, looking back, is how well I was functioning at that time compared to how I feel today. Back then I had a decent amount of energy. I was still getting up early in the mornings to do long trail runs, often up to the top of the mountain near our house. I’d been a runner for a long time and it was an activity that in many ways defined me. I’d run five full marathons by then, the most recent one in 2006 in New Orleans.
Really, anyone looking at me would have said that I was in great shape.
And I had a clear diagnosis, two of them in fact, clearly defined by blood tests. I was treating them effectively. After some fine-tuning the endocrinologist announced that my testosterone and thyroid levels were both right where they should be.
But nothing was changing much. Not my sexual functioning, not my mood. Not really.
So I was left with yet another dilemma: what does it mean when a person receives an accurate diagnosis and treats the illness adequately and still continues to experience the same symptoms?
That question would soon grow urgent.
Because, symptomatically at least, things had just barely gotten started.
