In the Eye of the Beholder

Mar 05, 2009

I have a neuromuscular disorder. This problem presented itself at birth, and I took much longer than other children to crawl, walk, and reach other physical developmental milestones. My sister is also affected, and although we have had extensive workups twice, the diagnosis is unclear. I had physical therapy up until my early teens, at which point I could do everything I needed to do in day-to-day life.

I have a neuromuscular disorder. This problem presented itself at birth, and I took much longer than other children to crawl, walk, and reach other physical developmental milestones. My sister is also affected, and although we have had extensive workups twice, the diagnosis is unclear. I had physical therapy up until my early teens, at which point I could do everything I needed to do in day-to-day life.

I still have some effects: I have trouble standing for long periods, walking long distances, or climbing more than 1 flight of stairs. My eyes don’t move, my eyelids tend to droop, and my gait is slightly abnormal. But to the untrained observer, I can generally pass for being out-of-shape. I was picked on frequently as a child for my different appearance, which one of my neurology professors later endearingly described as “myopathic facies.” But as I reached an age where it became inappropriate to mention physical differences, other people stopped constantly pointing out that I was different, which colluded nicely with my own growing denial. I managed to more or less forget that I was different-until medical school, when I required some accommodations.

In psychiatric residency, borderline and psychotic patients in the emergency department, who lack the social filters I had become used to, asked me questions such as, “What’s wrong with your face?” and “Are you retarded?” which I hadn’t heard since childhood. Still, I wrote these questions off to he pathology of the patients and clung firmly to my idea that I was just like everyone else.

In my PGY II year, one of my psychotherapy supervisors tactfully brought up his concerns about how I might discuss all this with my patients. He spoke with me about ways I could bring the topic up with my patients without revealing too much or crossing boundaries. We identified things that were important for my patients to know (I’m actually not falling asleep, and I’m not going to die from this), things I might share if asked (I was born with it, I have physical limitations, I’m not retarded), and things that I didn’t want to share (diagnosis or lack thereof, family history, personal experiences). We also came up with a strategy of telling my existing therapy patients as soon as possible and my new ones during the third or fourth session, which would balance the risk of their thinking I was falling asleep on the first session and never coming back with the risk of making the first session too much about me.

“One thing it’s important for you to communicate to your patients,” my supervisor said, “is that it’s OK for them to bring this up with you, and that you’re not going to be uncomfortable talking about it.”

“Oh,” I said. “But . . . what if that’s not true?”

“Well,” he said, “that’s something you’ll need to work on.”

Telling patients was something of a struggle. They tended to get uncom­fortable, deny they had noticed, and change the subject before my speech was complete. I generally let them.

At one point, I heard from a clinic supervisor that she had received a phone call from one of my patients who told her I was falling asleep during our meetings. My supervisor said, “She just kept saying it over and over. So finally, I . . . I told her about your disability. I hope that was OK.”

(You will notice that this is the first time I have used the word “disability.” It’s not a word I use in relation to myself. I accept it when others use it because it is technically accurate, but I do not think of myself as a “disabled physician,” any more than someone with asthma or some other chronic condition is disabled. I prefer to think of it as having physical differences that are relevant to clinical interactions because they are “in the room,” similar to race or gender.)

“Sure,” I said, “that was fine.” This was only partially true. I felt my supervisor had done the appropriate thing, and I didn’t object to her action. But a part of me was angry that this patient, who had already devalued me and rejected my help, now knew this highly personal thing about me-something I’d only recently begun sharing with colleagues.

I worked with my clinic attending physician on how to tell medical clinic patients about my disorder, because it was now painfully clear that this was going to be necessary on the initial visit. We talked about doing it at the beginning, but I couldn’t see a comfortable way to do this. “Hello, I’m Dr Davis, and I’m not falling asleep.” Or maybe the AA approach: “Hi, I’m Dr Davis, and I have a neuromuscular disorder.” I decided to try doing it at the end, while conducting the business of telling them how my voice mail works, giving them my card, and so on. I say, “I’ve had patients notice before that my eyelids tend to droop, and that sometimes I may look like I’m falling asleep when I’m not. I like to tell new patients that about myself, so you’ll know you can ask me if you see that happening.” I don’t say more unless they ask.

This felt horrible and made me vulnerable at first, but now it has become a part of my routine. Most patients politely say they didn’t notice, but a few say, “I did notice you looked tired. Thank you for telling me.” And one woman said, “Oh, I knew there was something wrong with you, but I couldn’t put my finger on it. Thanks.”

I also told my group therapy patients shortly after this experience. I had talked with my co-leader in supervision about the best way to do this. One of the group members was a woman named Mrs P. She had bipolar disorder and also had some borderline traits. My co-leader and I had sometimes become annoyed with her habit of interrupting other people to talk about herself, sometimes to share very trivial things at the expense of someone else’s deeply personal sharing. We speculated that she seemed to just wait for her turn to talk and wondered if she listened to the others in the group at all.

In December, Mrs P announced her intention to bring small Christmas gifts for the group. After much discussion in the group and in supervision, we decided this would be OK if the gifts were not of significant monetary value. We all opened our gifts in the group, and then we asked Mrs P to share why she had chosen the particular gifts she had and what they meant. She related her gifts to things that people had shared in the group and how she perceived them. She had clearly put a lot of thought and effort into the gifts; she had been listening after all.

Her gifts to me and my co-leader were small, plastic busts of women-what I thought were generic leader gifts. Mine was a woman in curlers, with a sign around her neck that read, “Beauty Queen.” Wondering what she could have been thinking, I asked her why she had chosen it.

“Because you’ve brought beauty into my life,” she said.

“Can you give me an example?”

“Well,” she said, “I remember the day you talked in group about how your eyes are different and how you’ve never felt pretty. I want you to know that I see beauty in you . . . that I think you’re beautiful, and you’ve brought beauty into my life.”

I was stunned. My co-leader assures me that I managed to say “thank you” in a way that conveyed the meaning of the gift to me. My internal monologue at the time was something along the lines of, “You CANNOT cry in group, you’re the freaking leader, DO NOT cry.” Thank goodness for co-leaders-mine gracefully steered the attention onto herself and her gift while I recovered. I was deeply touched. I also felt guilty for having so badly underestimated Mrs P. I was fairly certain that I’d never said in group that I didn’t feel pretty-a fact my co-leader confirmed for me after group-yet she read my feelings accurately in a way few people had, and then 5 months later reached out with this beautiful gift. (I will treasure it forever.)

This was the first true good I had had from sharing this part of myself with my patients. I was glad I’d shared with Mrs P, who not only gave me the gift, but in doing so, allowed me a better understanding of her. And I was glad I’d shared with my coleader, who was attuned to the significance of the gift and my reaction to it, and could appreciate the moment with me. All the missteps, hurt, and vulnerability were worthwhile, if only for that one interaction.

This is one of the most important lessons I have learned from a patient- that my denial had been affecting my interactions with patients. In letting go of it, I had opened the door to a new level of connection.

x