Being Undiagnosable (3)

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Jul 302010
 

Part 3: Ruled Out


[Part two of this series looked at some of my early symptoms through the lens of my experience teaching mental health diagnosis. In this post I describe the challenges that evolving symptoms pose in my efforts to obtain a clear diagnosis.]

Twitch

So….

I’d been experiencing sexual dysfunction and had learned that I was hypothyroid. I was still having intermittent sciatic pain and I had the sense that I was generally growing weaker. And I’d begun to have these odd “episodes,” which appeared to be but were not cardiac in nature. I had come to understand them as events which were triggered by a certain threshold level of physical exertion.

This was the situation toward the end of 2008: something was wrong and I wasn’t sure what and none of the symptoms were strong or clear enough to lead my primary doctor to a diagnosis.

Then….

The twitching started. We all have little muscle twitches from time to time. They’re annoying but harmless, just a small muscle somewhere on our body having a little party. That’s what I figured was happening one morning as I realized, while sitting in a meeting, that the same muscle in my chest had been clenching rather powerfully every minute or so since the previous evening. The spasm was strong enough that I’d started keeping my hand in that spot, putting pressure on it to try to stop it. It was strong enough that I felt the need to explain to my colleagues why I kept pressing on my chest as we talked.

Eventually the twitching stopped. But not long afterward I developed another twitch in a different spot. Then another. Then they began to overlap and evolve. After awhile they seemed to be happening more or less continuously. At some point I stopped thinking of this as something normal and began feeling like it was a new symptom.

That’s an extremely important diagnostic distinction. When do we cross that cognitive line, when we begin to define a particular experience as a symptom? It’s this line which determines what you include in your account when you’re asked by a doctor to describe what’s wrong with you.

And it can make all the difference in how you’re evaluated. If everything looks like a symptom (and I was just beginning to feel the risk of this happening to me), you wind up flooding the doctor with meaningless information…and very possibly sounding a little crazy. If, on the other hand, you minimize things and include only the most blatant symptoms, you’re likely to leave out the details which will allow a physician to make an accurate diagnosis. Underlying this problem is an unavoidable truth: you don’t know for sure what information is relevant and what is not.

Underlying this decision is a subtle strategic game between doctor and patient. The doctor holds the power to define and thus to legitimize the patient’s condition. The patient, consciously or unconsciously, is always shaping his or her narrative in order to lead the doctor in a particular direction. Sometimes the argument is focused on an explicit diagnosis: I know that I have MS and I want you to recognize this and give me a diagnosis. Other times, the goal of the argument is simply to be taken seriously: believe that there is something wrong with me and help me by giving it a name. And sometimes the argument is negative: please tell me that this is not ALS. But always, there is some sort of a goal behind a patient’s narrative.

At some point my muscle spasms became so continuous and persistent, so genuinely irksome, that in my mind they clearly rose to the level of symptom. They could happen anywhere on my body. It could be one hard muscular jerk, a long series of pulsing spasms, or something more diffuse, an undulating wave beneath the surface of my skin. (“A bag of worms” is how I once heard them described, and it’s a very good description.) When I lay down in bed I watched them ripple through me. I studied them, trying to detect a pattern. Were they related to some behavior that I could modify? Did they increase after exercise? After caffeine? Could I reduce them by meditating or doing progressive relaxation?

Stress is most people’s default explanation for a phenomenon like this, and it was mine as well.  But they seemed so independent of my emotional state. Could they be caused by the thyroid medication I’d started taking? I knew that too much thyroid hormone can make a person jittery. But my hormone levels still weren’t as high as the doctor wanted them and the medication hadn’t had any other perceivable effect on me. It hardly seemed likely that I’d jumped from hypo- to hyperthyroid without experiencing any of the benefits.

Then….

One evening my wife looked at me and commented that I’d lost weight. I’d noticed it as well. I’ve rarely paid much attention to my weight. For most of my adult life whenever I stepped on the scales I weighed somewhere between 180 and 190 pounds. It didn’t matter whether I was in full training for a marathon or whether I was barely exercising at all. That was just where the thermostat controlling my body’s weight was set.

At a doctor’s visit in January of 2009 I’d weighed in at 187. A few weeks later when I stepped onto the scale at the gym I was closer to 180. Odd, I thought. My appetite hadn’t changed in any noticeable way. But I wasn’t yet alarmed. Losing a little weight didn’t seem like a bad thing. It was nice that it was happening without any effort on my part.

But it seemed like every time I checked my weight…and I started checking much more often…I was a little lighter.

Just as with the muscle spasms, my mind went first to stress or anxiety or depression as an explanation. I tried to make that explanation fit, because it was an explanation I could do something about. But somehow it just wasn’t right. After decades of therapy I have become deeply familiar with the patterns of my own anxiety and depression. Like a diabetic who has become adept at tracking their blood sugar, I know when I’m depressed, and when I am I know how to gauge just how depressed I am.

I talked it through in my individual therapy, in our marriage therapy, again and again. And I kept coming down to the same simple conclusion: I’d been far more depressed and anxious in the past…and I’d never lost weight as a result.

And there were other changes. The musculature in my arms and shoulders and legs started looking different to me. I was bonier, and my muscles seemed much more clearly defined. As with the weight loss, this looked on the surface like a positive thing. It was as if the fat on my body was melting away. The thing was, as with the weight loss, I’d done nothing to deserve this. I was exercising less and less, trying to avoid triggering the sciatic pain and to stay beneath my ill-defined exertion threshold. It was just happening.

It’s unnerving to watch your body change for no reason, even if the change seems like a good thing. I didn’t know how to make sense of what was happening. I was trying to keep my mind from defining this change in my musculature as “atrophy.”


Being differential

Self-diagnosis, anyone will tell you, is a risky business.

But in the absence of a diagnosis you’ve got little choice but to try to make sense of your symptoms yourself.

And anyway, it’s irresistible to try. It’s a mystery that you feel you should be able to solve. Symptoms X and Y should add up to illness Z. You ought to be able to figure that out.

But of course it’s never so simple.

Symptoms are like the shadows in Plato’s cave. They’re the secondary manifestations of a primary cause (or causes). Often they’re subjectively experienced, often they’re murky and  indistinct. Making sense of them can be like trying to understand a joke in a foreign language. Even if you’re reasonably fluent in the language, the subtleties of meaning and the contextual features that make humor work are very hard to catch and interpret.

A single symptom (or a clearly-defined set of symptoms) that is well established as a marker for an illness makes things easy. A headache might mean any number of things. But a malignant mass in the brain definitely means you’ve got brain cancer.

But add any other element and all those dilemmas from Part One of this series come rushing back in. Two or more symptoms that aren’t obviously related to one another. Unstable symptoms that emerge and retreat over time. And most difficult of all, symptoms that are subjectively experienced and not empirically verifiable…like fatigue, perceived weakness, or pain.

That’s why diagnosis is, as the cliché goes, both an art and a science.

The science of the procedure is embodied by something called “differential diagnosis.” In theory this is a systematic process of elimination, considering the possible causes of symptoms, eliminating possible causes until you are left with a single, clear answer. In practice, the art of diagnosis often involves the consideration of contextual information and subjective impressions that go beyond the strict list of diagnostic criteria.

The mechanical process of differential diagnosis can be reduced to a flow chart which is guided by logical operators. If the symptom is a headache, what are all the possible causes? Concussion, meningitis, malaria, typhus, tumor, brucellosis, flu, encephalitis, migraine, common cold, etc. Once a full history of the symptom has been gathered, you can start considering the entire pool, then begin eliminating everything that can be proved not to be the cause.

Differential diagnosis proceeds by a process of ruling out alternatives to the most parsimonious explanation for a given symptom. Rule-outs are especially important – and are usually reasonably easy to establish – for dangerous and debilitating conditions. Your headache could be caused either by stress or by a brain tumor. Being able to feel reassured that it’s not the latter is extremely helpful.

Theoretically this is a systematic process but in fact of course it’s rarely done in an entirely systematic manner. The structure of diagnostic decision-making is narrative and conversational. During a diagnostic work-up information emerges in fits and starts, questions are asked in no particular order. Ideally, at some point in the course of an examination, all of the relevant information eventually comes out, the physician has asked all of the necessary questions.

That’s to say, the supposedly linear practice of differential diagnosis is actually usually more holistic in nature. Further, what is considered is not simply the diagnostic decision-making tree, but the clinician’s subjective judgment. What this feels like. Which is shaped by the particular symptoms and diseases to which the clinician has been exposed. To a physician practicing in the tropics, a patient presenting with Dengue Fever is going to have a certain “feeling” which goes beyond the strict set of objective markers of the disease.

To make a different comparison, as a mental health diagnostician I have learned through experience that there is a certain feeling I get when I’m sitting with someone who suffers from clinical depression. It’s different than the feeling I get when I’m sitting with someone who is suffering from panic attacks. Even before that person has said a word about what they’re going through, possibly even in the initial phone call setting up the appointment, I’m already gathering a diagnostic impression. (This is a subject I’ll be discussing in more depth in a future post.)

And that impression is going to guide my thinking as I formulate a concrete diagnosis. This has both benefits and risks. If I’m able to read people well (if I am able to use my self effectively as a diagnostic tool), I can often zoom in quickly on the best way to help. But on the other hand, I also run the risk of being overly confident about my own impressions, which can lead me either to misdiagnosis someone or to overlook co-morbid conditions.  If, for instance, I have a practice which consists largely of clients suffering from trauma, I’m going to be more likely to assume trauma as the cause of a new patient’s symptoms. So I have to figure out a way to build checks into my default diagnostic thinking.

Although medical diagnosis has a stronger empirical basis for much of its process, the same set of issues is unavoidably in play. Because ultimately, as I began this series by saying, diagnosis isn’t simply a matter of physical or mental health. It’s about how we understand our experience. Diagnosis takes place between human beings and in the end it is about how we come to know what we know within human relationships. It is in fact the same process you go through when you try to figure out why your spouse has grown distant. Diagnosis is a profoundly relational event.


[In part four of this series, my evolving symptoms will be placed before a set of specialists. And I will pose the question: what is the meaning of a diagnosis if the patient doesn’t agree with it?]

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Being Undiagnosable (2)

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Jul 192010
 

Part Two: Insidious Onset


[Part one of this series described the early history of my physical symptoms while also identifying a series of diagnostic dilemmas.]


Receiving a diagnosis…being a diagnosis

Although I don’t usually think of myself in these terms, I am in fact a diagnostician by training. As a psychotherapist, it’s an integral part of my work which serves two basic functions. The first is mundane and uncomfortable: in order to be reimbursed for my services by insurers I need to provide those insurers with a reimbursable diagnosis for my patient. The second is more complex and more poignant: I am beginning the process of putting words to human suffering. And in psychotherapy, putting words to suffering is the way in which healing happens.

A more mechanistic way of saying this is that diagnosis guides treatment. More than a label, a diagnosis gives me a framework from which I can attempt to help.

Central though the task is however, diagnosis and mental health have never meshed well. Witness the interminable wars over the definition of categories and criteria for each new version of the American Psychiatric Association’s Diagnostic and Statistical Manual (the “bible” of mental health diagnosis). You don’t usually see vicious debates breaking out between doctors (and pundits and advocacy groups and ordinary people) over the definition of Arthritis, say, or Measles. Unlike mental health diagnoses, such conditions are characterized by clear-cut and physically observable symptoms, which can be confirmed by empirical lab tests.

Although, as will become clear as my own story plays out, when medicine bumps up against the outer edges of objectively definable symptoms (as in the case of conditions like Chronic Fatigue Syndrome, say, or Fibromyalgia), the same sorts of debates begin to flare up.

In mental health the discomfort around diagnosis speaks to an underlying dilemma in how we think of ourselves as human beings. As a mental health worker I am trained to value the uniqueness of each human experience. As a result I recognize how easily a diagnostic label can conflate with and distort a person’s identity. Because we don’t say “I have Depression,” but rather “I am depressed.” We don’t say “she suffers from Borderline Personality Disorder,” but rather “she’s borderline.” That tension exists in patients as well as clinicians. Part of us wants our experience to be clearly definable; another part of us insists that mystery lies at the core of our unique human experience.


Completely correct, absolutely wrong

From time to time I teach diagnosis to graduate counseling students, and it is always an invigorating experience. Counseling students commonly approach the DSM with a high degree of wariness, even hostility. They see it as a medical model which imposes a pathology-based perspective on human experience, contrary to the strength-based compassion from they wish to operate.

I tell them that are completely correct. And I also insist that they are absolutely wrong.

I suggest that they consider a simple, specific scenario.

Say you’re a counselor and someone comes to you saying that they are feeling overwhelmed by sadness over the break-up of a romantic relationship. As a counselor, how do you help them while refraining from imposing a diagnosis on them?

The answer to that question quickly reveals the many subtle levels of diagnosis that take place within all of our human interactions.

The hardcore counselor-type will maintain, following the technique of Carl Rogers, that simply listening and compassionately reflecting back a person’s experience is all that is necessary.

But what is it, exactly, that you are reflecting?

“You’re feeling really sad because your girlfriend left you.”

You may not be assigning a diagnosis in making that statement, but you are agreeing with (and thus reinforcing) your client’s self-diagnosis.

And where are you going to go from there? How are you going to help?

I maintain that you can’t move forward in any way without holding some sort of diagnostic theory in mind. I don’t think it’s possible for a counselor to set aside your own assessment of the meaning and causes of their client’s condition. Further, I believe that it’s potentially dangerous for us to believe that we can do that.

To be clear, this is a different level of diagnosis than the DSM code you put down on the form that you submit to an insurer. Diagnosing with the DSM is a process rife with problems. But that doesn’t mean that diagnosis itself is the problem. Because a diagnostic process of some sort is essential to our ability to make sense of other people (and ourselves). We understand others by attributing meaning to their words and actions. But of course the meaning that we assign may or may not correspond to the meaning others give it. Many who are drawn to mental health professions are uneasy with the idea of claiming an authority which allows them to interpret the behavior and the experience of others. This uneasiness is a good thing. Because there’s a power in that authority that can easily be mishandled or abused. The challenge of diagnosis lies in being able to recognize that while assigning a diagnosis to a human experience helps us to make sense of that experience, it simultaneously increases the risk of our misunderstanding that experience.


Refugee

There is a certain category of medical patient whose fundamental goal in interacting with medical professionals is solely to obtain a diagnosis. For that person, the meaning of a diagnosis transcends the meaning it might have in more routine medical interactions.

Say you’ve got a bad sore throat and your doctor does a culture and identifies it as strep. That is not an event which fundamentally alters your definition of yourself. But if instead you suffer from vague and shifting symptoms, if those symptoms come to shape your day-to-day experience, if they persist for months and years, and if no one in the medical profession can identify an empirical basis for those symptoms…

Well, that’s the situation I was about to find myself in. I was joining the ranks of the medical refugees. And from the perspective of a medical refugee a diagnosis – any diagnosis – becomes the holy grail. Because without a diagnosis, no one can treat you. In this situation even a really nasty diagnosis – MS, ALS, cancer – becomes preferable to living your life knowing something is very wrong without being able to identify what it is. Just as your identity and your experience has become shaped by your symptoms, the search for a coherent diagnosis becomes a profound search for meaning and self-definition. It’s a search for truth.

As I described in my previous post, the diagnoses that I had been given (or had assigned to myself) to make sense of the changes in my sexual functioning included normal aging, endocrine imbalance, and Post-Traumatic Stress Disorder. The first was untreatable, the latter two had been treated without a resolution of the underlying symptoms, suggesting either that the treatment was inadequate or that the diagnosis was inaccurate.

And things were about to get much more complicated.


Markers

Although there are certain clear markers, the changes in my functioning didn’t happen abruptly. Rather, it was what the medical field refers to as an “insidious onset.”

Through the summer of 2008 I was continuing to see the endocrinologist, who was looking carefully at my blood levels as he tried to fine-tune the dosage of my testosterone and thyroid medication.  He witnessed one of those markers – an inexplicable abdominal rash that developed that summer. It was blistery and itchy and it persisted for six weeks or so. It was odd, nothing like anything I’d ever had before, and I noticed it without knowing what to make of it. He looked at it and did more or less the same thing that I did. He said, “hmmm.” Then he went about his business.

Around the same time I developed what I first assumed was an ordinary running injury. Every morning when I went out on my run I began getting sharp shooting pains in my left leg after about a half mile in. I assumed it was a pulled muscle of the sort I’d had in the past. My first response was simply to try to power through it. When it didn’t go away on its own, I laid off of running for awhile – that had always worked before. But it didn’t help this time. And worse, I began experiencing the same pain in other situations (driving was especially bad) and I started experiencing a series of other sharp pains in my lower back and leg.

Finally I went to my doctor, who said it was Sciatica. A nice, clean diagnosis. He prescribed an anti-inflammatory and some physical therapy. The treatment helped a little, but it didn’t eliminate the pain, which I continue to experience intermittently. It was an interesting diagnosis because it seemed both accurate and insufficient. I continue to wonder what, if any role this particular symptom plays in the larger diagnostic picture.

In order to avoid activating the sciatic pain I switched to biking for exercise. But I began to experience a heavy exhaustion when I biked at my usual pace up even very moderate hills. As a (former) distance runner, I am very attuned to the responses of my body to different levels of exertion, and so I could clearly recognize this as a change in how my body was performing. This was not just the ordinary aerobic effects of a good work out. This was a feeling of internal collapse.

It was odd and it was very distinct. It’s usually the place I start when doctors take a history, because it’s the clearest early symptom related to the fatigue and weakness that I suffer from presently. It is a key marker in my subjective experience as well, one of the few things that has been consistent over these past few years: when I exert myself beyond a certain level, I experience a physical collapse which is marked by a feeling of weakness, shakiness and light-headedness. One of my key adaptations over the past few years has been modifying my exercise routine in order not to trigger this response. I no longer run. I bike regularly, but not intensely and not on hills the way I have always enjoyed. Instead, I have joined a gym where I can work out on exercise machines in a regulated way which usually keeps me from triggering this response to exertion.

I hate the gym. But it’s the only way that I can continue to get the exercise I need.

This is where diagnosis begins to cross over into the realm of self-definition. Because whatever was wrong with me was altering my ability to do the things that make me who I am. I went back to my doctor and tried to explain what I was experiencing. I told him that there seemed to be something larger wrong with me, that these changes were broader than the limited diagnosis he’d given me. He shrugged and said, once again, “welcome to middle age.”


A Million Bucks

It was clearly time to find a new doctor. I talked to a colleague who recommended an Internist she knew. She said: “this guy’s like a dog with a bone when he gets a diagnostic puzzle. He’ll keep working on it until he figures out an answer” That sounded good to me. I met with him and he took a history, gave me a physical. He ran some basic blood tests, all of which came out normal.

“I can run more tests,” he said, “but I’m not sure what they’ll show.”

I asked for a referral to an oncologist. I wanted to rule out any recurrence of the cancer.

Then I had my first real “episode.”

This was in November of 2008. An early snow had fallen – it was wet and heavy. I went out at mid-day to shovel the sidewalk. This is an activity that I ordinarily enjoy. I like the physical work-out, the exertion, and the visible result of my efforts. But this time something started happening to me. I started feeling light-headed. And weak. It was like the experience I’d had while biking, but much more intense. It was a difficult sensation to describe, but I can say that I didn’t feel well connected to my own body and even though I seemed capable of continuing to exert the effort necessary to shovel the snow it didn’t feel like a good idea to keep doing it. And all of the physical sensations seemed oddly focused on the upper half of my body.

It was really strange. It was not something that had ever happened to me before.

My wife looked at me when I came inside and she grew instantly alarmed. She said I looked like a ghost. Which was what I felt like. I recovered after an hour or so and I felt depleted but more or less normal afterwards. My wife got me an appointment with the new doctor for the next day.

“I have an idea about this,” he said. “I don’t think that this is going to be a House episode.”

He gave me an EKG and he thought he saw an abnormality in it. It seemed to be a cardiac issue. I observed his diagnostic certainty. I tried to accept it. Coming from a mental health perspective, I could not think about any diagnosis without also considering the meanings attached to it. What would it mean to me to have heart problems? On one hand, the prospect of a heart attack was frightening. On the other hand, it seemed like one of the most well-understood and treatable of conditions. That was comforting.

But it also just didn’t quite fit. I was a marathon runner. Aside from high cholesterol, which was being adequately treated with statins, I had never had anything that remotely like a heart problem.

The next day I found myself on the treadmill at the cardiologist’s office.

The guy was old-school. Paternalistic and condescending.

“No one ever beats the treadmill,” he said.

But I was a trail runner, accustomed to running straight up the side of mountains. The test required that I get my heart rate up to a certain level at which I would be adequately “stressed.” It took a long time for me to get there. And when I finally did, when I was unplugged from the machine, the doctor came in and told me what I already suspected: my heart was in better condition than 99% of the ordinary population. The abnormality that my internist had seen was actually an artifact of how unusually strong my heart was.

I have struggled throughout this experience with this particular paradox: I look really healthy. That’s one reason why nearly every doctor I have seen throughout this odyssey has suggested that the real diagnosis must be depression, or anxiety, or both. Even though I am more familiar than they are with these diagnoses and their treatments, even though I have described to them the years of therapy I have been through and have outlined the lack of correlation between my mood and my physical symptoms.

“Have you considered going back to a therapist?” one doctor asked me. “Because on paper you look like a million bucks.”

As I began inexplicably losing weight, this disparity between my outward appearance and my inward experience was about to grow even greater.


[In Part Three of this series, I’ll describe my tour of medical specialists, which eventually led us to the Mayo Clinic. And I will further explore the cultural meaning of be identified with a diagnosis.]


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Being Undiagnosable

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Jul 132010
 

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.


[Part two of this series will look at my experience of a puzzling set of new symptoms through the lens of my experience teaching diagnosis.]

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Katrina Stories

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Mar 182010
 

As I head off to the American Counseling Association conference in Pittsburgh this weekend, I am posting my account (in a five-part video series) of my experiences as a volunteer mental health worker in the aftermath of Hurricane Katrina. As a therapist (especially one who is guided by attachment theory), I have long understand the importance of helping my clients form a coherent narrative after they have lived through life-shattering trauma. But I don’t think I fully appreciated how deeply healing it is to create and re-tell such stories until I went through this experience myself. I tell this story with the hope of healing for those who continue to suffer the effects of the storm, and with the understanding that those who strive to help others heal can experience their own lives unraveling in the process. We all need to re-weave our experience into stories that make sense.

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George Will: human suffering = moral weakness

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Mar 022010
 

As a psychotherapist and as someone who has taught diagnosis to aspiring counselors, I take serious issue with George Will’s irresponsible and mystifying attack on the Diagnostic and Statistical Manual of Mental Disorders in the last Sunday’s Washington Post.

Will describes the DSM’s classification of psychological disorders as a liberal plot which is designed to “absolve the individual of responsibility” for his or her actions and which “strips the individual of personhood, and moral dignity.”

He supports this argument by selecting short phrases from the recently released proposed revised DSM criteria, describing characteristics and behaviors which are common to particular disorders. What Will pointedly omits however is the thoughtful and complex language in the DSM which sets these characteristics into context. A person suffering from Narcissistic Personality Disorder does have, as Will states, a personality style characterized by “grandiosity” and a “need for admiration.” And if this were all that was necessary for a diagnosis, George Will himself would merit the diagnosis, along with a significant percentage of the rest of the population.

That’s not the case, though. In order to diagnose this (or any other Personality Disorder) the DSM requires that the patient’s experience and behavior rise to a level of significant, life-long distress which seriously impairs their functioning. In other words, you don’t get to have Narcissistic Personality Disorder just because you’re grandiose. Such traits have to represent “the failure to develop a sense of self-identity and the capacity for interpersonal functioning that are adaptive in the context of the individual’s cultural norms and expectations.” This adaptive failure must be “associated with extreme levels of one or more personality traits.”

The DSM exists because mental suffering exists. It is inevitably an imperfect document which is subject to continuous and vigorous debate among professionals in the field. I myself take issue with aspects of a number of its definitions and categorical assignments. In fact, I have never met a mental health professional who doesn’t.

But contrary to Will’s baffling argument, diagnosing someone with a mental disorder does not absolve them from responsibility for their actions. Nor does it strip away their personhood. Rather, it is the means by which a person can identify the sources of their suffering and thus assume greater responsibility for their actions. Diagnosis, done responsibly, doesn’t take away our personhood, it helps us restore it.

How else would Will have us start to address the mental and emotional suffering of our fellow humans if not by naming it?

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True Manhood…

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Feb 232010
 


For the past year and a half Dana Jennings has been writing and account of his experience with prostate cancer in the New York Times, from diagnosis, through treatment and recovery.The titles of his pieces always pull me in. After Cancer, the Echo of Desire.  My Brief Life as a Woman. They announce that he is going to be talking about things that men don’t usually talk about. Since so much of my own life has been spent trying to make sense of the meaning of masculinity and male gender identity, and because I’ve grown so accustomed to the absence of any real discussion of these issues in the media, whenever any man writes about the meaning of masculinity in his life I feel an immediate sense of gratitude. Thank you for speaking about this.

But every time I venture to read one of Jennings posts, I find myself going through the same, confusing experience. I notice the title and get interested. But a few paragraphs in I find myself glazing over and feeling aggravated. Something puts me of and I stop reading before I’ve bothered to figure out what is bothering me so much. I went through this experience again trying to read his latest column, After Surviving Cancer, a Focus on True Manhood. Except that this time I forced myself to pay attention to what felt so wrong.

Two things that you need to know before I get into this. The first is that Mr. Jennings seems to me to be a very decent man. I truly wish him well. I’m glad that he’s making sense of his experience by writing about it and I appreciate the courage it takes to discuss these subjects publicly. And second…my own history. I myself am a cancer survivor. In my mid-twenties I was diagnosed with testicular cancer. I lost a testicle in surgery, had (over the absurd objections of my doctor) sperm samples frozen, then endured radiation treatment and several years of follow-up testing before I was finally  pronounced well. This was in the mid-Eighties, before Lance Armstrong, before anyone was even remotely talking publicly about what it might mean for a man to confront a simultaneous threat to his life and his masculinity. Over two decades later, I’m still alive and I have two beautiful sons. But the emotional impact of the cancer and its implications about my own masculinity still affect me, every day.

So why should I be so irritated reading a man openly discussing his experience with erectile dysfunction in the aftermath of cancer? I keep telling myself I should be grateful. It’s enough that someone is writing about it at all.

But then I read passages like this:

 

We founder in a mere surface culture of smirk, snark and innuendo. The greedy objectification of the body — in both women and men — accelerates, speeding so fast that the objections can’t even be heard over the roar of the mass media.

We are told to worship washboard abs and Everest biceps, improbably perky breasts and buns of titanium. It sometimes seems that every image spewed forth by the electronic media resonates with just one unsubtle subtext: sex.


The florid, non-sensical prose is bad enough. But the real mystery is how such truisms can be successfully passed of as insight. Decades ago, when feminist writers described these same phenomenon, it was  revolutionary.Today it is received wisdom. Except when a man says it. When a man recites a pat description of the objectification of male sexuality, we stand up and (take a look at the comments following the piece) applaud.

Do we really give ourselves so little credit? Honestly, the cultural objectification of male sexuality pales in comparison to the cultural infantilization of men’s emotional capacity. Men are seen (and we tend to see ourselves) as emotional children. We are so pathetic, so emotionally incapacitated, that stating the obvious is the best we can manage.

As men we discount our own capacity when we buy into this narrative. We sacrifice our legitimate need to tell the harder truths about the pain and loss (and the consequent aggression and violence) that is woven into masculinity. And, inevitably, we retreat back into justifying and reinforcing the very stereotypes of masculinity that are the source of the problems in the first place.


Yes, my erectile function is still a work in progress, but I don’t feel diminished; I don’t feel that I’m less of a man. My voice is still as deep as a well, my eyes a steely blue. I still relish a strong stout, and I can hold forth on the arcane points of the safety blitz. (Though sometimes I am tempted to say, “It’s O.K., ladies, I’m harmless.”)


There is the dilemma of masculinity in a single paragraph.The sexualization and objectification of masculinity that Jennings was complaining about a few sentences earlier are in fact embedded within his defense of his own masculinity. He buys into the very concepts he claims he is trying to shuck off. Either we are John Wayne, dangerous behind our steely eyes, or we are Richard Simmons…emasculated…”harmless.” It’s one or the other.

The hard truth is that we have barely begun to do the work of imagining and creating a model of masculinity that transcends these tremendously damaging categories. Whatever “true manhood” may prove to be, it’s not this nicey-nice and spurious version of male emotional experience.


Libido comes and goes at odd hours, like a child home on a college break. But curiously, I feel that the life my wife, Deb, and I lead is more intimate than ever. I was the one who was sick, but we peered into the bleak chasms of cancer together. As I was buffeted by diagnosis, treatment and the aftermath, she was my advocate, my confidante, my unwavering caregiver. And everything she did was suffused by her love for me.

It was an intimacy beyond words. And believe me, I have a lot to live up to if the time comes for me to care for Deb.

True intimacy isn’t about the hydraulics of the flesh. It’s the smell of a certain shampoo in the hair, a passing touch in the kitchen, the taste of cold blueberry soup on a hot summer day, the gentle nostalgia of “Aja” by Steely Dan, and your heart melting at the sight of your wife of 28 years sound asleep after midnight — the murmur of HGTV having lulled her to slumber.


To start with, Jennings badly mis-defines the word intimacy. Intimacy is shared vulnerability, and that can take many forms. But intimacy is not the smell of a shampoo, it is not a passing touch, it is not a taste or a sound. That is called familiarity. He is right about one thing: true intimacy is not entirely about “the hydraulics of the flesh.” But he uses this point to obscure an equally important corollary point:  that the hydraulics of the flesh permit a particular sort of intimacy which cannot be achieved in any other way.

That doesn’t mean that other forms of intimacy can’t be as deep as sexual intimacy. They are simply different.

To accept with sadness that other forms of intimacy will have to suffice for a loss of sexual functioning is an act of compassion toward oneself and one’s partner. But it is a lie to pretend that other forms of intimacy  are equivalent and can replace sexual intimacy. Jennings wants (as we so often do as men, and as humans) to have it both ways, to receive compassion for the loss of sexual intimacy while simultaneously denying the true significance of sexuality in a man’s life.It doesn’t work that way. Which is why he winds up participating in the very objectification he claims to be opposing. It’s just that it happens on an emotional rather than a physical level. He’s adhering to the deadening code of male social communication: if you’ve been through something horrific, you can still talk about it publicly as long as you let everyone know that everything is fine.

Well, I’m here to say that everything is decidedly not fine. Everything is hugely screwed up when it comes to male sexuality and gender identity. It has been for centuries and we’re only just barely beginning to wake up and realize this. You might argue that this is where we have to start, with unadorned description of our experience. But I would argue that as long as the narrative is participating in the assumptions which caused the damage in the first place, it cannot possibly advance the cause.

We’ll know that we’re making progress when we start talking authentically about the entire spectrum of trauma that is woven into the socialization of boys, from circumcision to hazing rituals and everything in between. We’ll know that we’re making progress when men can speak those simple truths, with a bracing, honest rage.


We founder in a mere surface culture of smirk, snark and innuendo. The greedy objectification of the body — in both women and men — accelerates, speeding so fast that the objections can’t even be heard over the roar of the mass media.

We are told to worship washboard abs and Everest biceps, improbably perky breasts and buns of titanium. It sometimes seems that every image spewed forth by the electronic media resonates with just one unsubtle subtext: sex.

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