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Becoming a Person I Hardly Recognize

Posted Sep 18 2012 5:42pm

I’m intimidated by physicians. It’s not a concern about intellectual equality; I spent my career surrounded by brilliant, highly educated, and talented people whose intellectual prowess attracted rather than intimidated me. It is unrelated to my insecurities about my body. It’s not about the sterility of doctors’ offices and other healthcare facilities. It’s not related to the vulnerability I feel about being ill. It’s not about physicians’ behavior toward me; as a matter of fact, since my MS diagnosis I have had the great good fortune to have excellent doctors who treat me kindly and with respect. Almost immediately I trusted and felt connected to my neurologist – the physician most people with MS see regularly – and these days I even look forward to seeing him. But when I see any physician for the first time I become a person I hardly recognize; I feel agitated, insecure, and deeply concerned about whether I will be “liked.” Before those first appointments I feel certain that the physical difficulties I am having will not be visible and that I will not be believed when I describe them, and I imagine that my symptoms will be labeled psychosomatic or that I will be accused of malingering or melodrama.

My worries about that possibility are not completely unfounded. As a teenager, I experienced an extended bout of partial blindness. At the time, the ophthalmologist and other doctor I saw were sure that my symptoms were psychosomatic or that I was, for some unknown reason, “faking” them—and my mother believed their assessment. The adults in my life went so far as to insist that I wear very large glasses with glass rather than plastic lenses because they believed that the heaviness of those spectacles combined with their unattractiveness would “cure” my desire for “attention.” The humiliation I felt about being accused of faking my blindness inspired me to spend the next several decades avoiding doctors as much as possible. And, for fear of being dismissed as mentally ill, I did not speak about that experience to the few physicians I did see—that is, until I met my current neurologist. I don’t know what question he asked me that prompted my disclosure about the blindness and the doctors’ assumption that it was psychosomatic, but I now realize that my revelation helped him diagnose my MS. For many people, partial blindness like that I experienced when I was a teenager is the earliest symptom of the disease. When he delivered the news that I had MS, the embarrassment I felt about being told that my blindness was imagined was significantly relieved when he added, “Do you remember when you were a teenager and everyone thought you were crazy? That blindness might well have been your first symptom.”

Over the past month, though, I have become keenly aware that recent positive experiences with my neurologist have not fully allayed my fear that physicians will see me as a medical “drama queen” or as a person who “fakes” symptoms to garner attention. Concerned about the high doses of anti-spasticity medication needed to control the MS-related muscle spasms and rigidity in my legs and arms, my neurologist suggested that I might benefit from an Intrathecal Baclofen pump. The pump functions by delivering very small amounts of liquid Baclofen (one of the most commonly prescribed anti-spasticity medications) directly to the spinal cord, thus dramatically decreasing the amount and increasing the efficacy of the medication. I am no medical professional, so my knowledge of these matters is rudimentary at best, but from what I understand, by the time oral Baclofen makes its way through the bloodstream and is otherwise “processed” by the body it is difficult to determine the amount of medication that actually “works” against the symptoms it is meant to treat. What’s more, oral Baclofen and other anti-spasticity medications tend to cause excessive drowsiness and other side effects that interfere with basic daily functioning. I am told that because intrathecal Baclofen is delivered directly to the spinal cord, the dosage is measured in micrograms rather than in milligrams. This significant reduction in the amount of medication needed to treat spasticity, combined with the pump’s direct delivery (which means that the medication need not be processed through the brain), significantly reduces medication-induced fatigue and other side effects.

The process of determining whether the Baclofen pump will work for me and then of having it surgically implanted has required a number of appointments with doctors new to me. The first of these was a physiatrist who met with me once to describe how the pump will function and then again to oversee the pump trial. The first time I saw her she commented that my spasticity seemed under control when she did her examination. My defenses went immediately into overdrive and I asked – probably quite defensively – what she “meant” by her comment. I might even have asked whether she thought that the pump would not be useful for me. My unspoken assumption was that she was expressing her disbelief that I was experiencing severe spasticity. Of course, her response to my question was that she meant that the high dosage of anti-spasticity medication I was taking was working well. She added that the high dosage itself was reason enough to move ahead with the trial because she shared my neurologist’s concerns about the dangers of taking large doses of this medication over an extended period. The day of the pump trial I was instructed to skip my morning dose of anti-spasticity medication. I did as directed, but I was nearly frantic with worry that my spasticity would not be obvious after only one missed dose. I imagined a scenario in which I was told that my spasticity was minimal, that I was exaggerating its intensity, and that I needed to go home, reduce my level of medication, and quit being such a drama queen. What really happened was that when my pretrial spasticity was measured it was classified as a “strong 3” (out of a possible 4) on the Ashworth scale. In other words, my symptoms were acknowledged rather than dismissed.

Because the trial showed that the injection of liquid Baclofen into my spine is extremely effective for relieving my spasticity, the next step was for me to visit the neurosurgeon who would implant the pump and place the catheter that will release the medication. Once again, I was struck by an absolutely inexplicable worry that I would be judged negatively by this physician I had never before met. The night before I met with her I dreamed that she told me to leave her office, to stop wasting time that she could be devoting to patients who really need her, and that I was probably faking MS in the first place. When I arrived for my appointment, the person taking my information asked me if I was still working and as I answered in the negative hot shame filled my body. Though the question was nothing more than a part of the process of gathering demographic information for my records, I was overwhelmed by the fear that the surgeon I was about to see would interpret the fact that I am no longer working as  clear evidence that I am nothing more than a malingerer. During my appointment, I asked the surgeon whether she believed that I should get the pump – by which I really meant that I wondered whether my spasticity was “bad enough” to warrant the pump. Her response was that my neurologist and the physician who had overseen the trial had already determined that I needed the pump and that it would benefit me; the purpose of her examination was merely to discuss the logistics of the surgery itself.

Over the past couple of weeks, I have struggled to find a conclusion to this post. I keep asking myself, “But what does all of this mean? Why write about my ridiculous neuroses? Who will care?” I have tried reading the previous paragraphs time and again, thinking that they would certainly reveal their own meaning. The writing has, however, failed me because its focus on my personal experiences seems to imply that there is something unique about them, that the intimidation I feel around physicians I am meeting for the first time magically appeared on the wings of a traumatic event in my childhood. My suspicion is that this is so far from the truth that it amounts to a lie; I have heard from friends that they share my fears that their physicians will think them melodramatic or otherwise “difficult.” One of the problems with chronic progressive illnesses is that the person who is ill is aware that the severity of specific symptoms is increasing long before that progression is visible to others. Another is that the progression of symptoms is frightening, and it’s not uncommon for the person experiencing it to wonder whether she is somehow responsible for her advancing symptoms. Perhaps she hasn’t exercised hard enough or long enough. Perhaps she hasn’t tried the right supplement or diet or medication or treatment. By the time she enters a physician’s office, she has been bombarded with infotainment “news” stories about people who have “overcome” their diseases, shed their canes and wheelchairs, and are now living “normal” lives.  With all of that ringing in our ears, is it any wonder that our sense of vulnerability might be heightened when we find ourselves in situations that make us acutely aware of our need to be heard and believed?

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