The following manuscript was published as part of the February 2019 Social Medicine theme issue.
The first time I saw her on the ward, I was instantly curious. There was something so innocent about her; she looked younger than her age, like a little girl. She was barefoot and had uncut, unkempt hair, as if she had accidentally wandered in from a different time period.
She didn’t look like she belonged on an inpatient psychiatric unit.
When I introduced myself to her as her psychiatry resident, she abruptly enveloped her arms around me in a hug. This was her usual greeting she explained, to anyone with “good energy.” She often tiptoed around the unit, surprising both staff and patients with sudden hugs. This was part of her psychiatric presentation, I learned eventually. She believed in love and magic, and had periods of intense elation, stripping off her clothes and dancing, saying she saw flowers and peace everywhere she looked.
Every hospitalization, she would eventually agree to take her medications, but then immediately threw them out after discharge, because she never could accept she needed them. Her world view was happier without them. And so, she would return to the ward, again and again, until this pattern became her entire life.
This was a cycle, and we weren’t breaking it.
It was defeating, she admitted to me one time. When the medication began to work and the mood elevation would dissipate, she would become sad, despondent. She was not smiling her glowing smile anymore and stayed in bed for hours in her dark room. After waking up from a nice dream, it is the disappointment you feel as the pleasant fantasy fades. Reality hit hard, and she didn’t want it, she detached from it. One day the cycle ended, but not the way anyone expected.
When I heard that she had killed herself, it took me a while to believe. I think maybe because she had been so sweet-tempered, as well as young. For all of us, the loss of youth and its potential is always particularly heartbreaking. For me, it was heartbreaking because I had a glimpse of what had caused her deepest pain, as she had made an effort to explain it to me. I looked her in the eyes and saw it, and this same pain killed her.
This explanation came out the first and only time she opened up to me, after about one month of working together. In the beginning, she wouldn’t say a word to me, but always agreed to take a walk up and down the limited space on the unit, never sitting down. I assumed it was too serious, sitting face to face, with me looking at her expectantly waiting for answers. She was too obliging to refuse me completely, but she resisted opening up. Perhaps she didn’t trust that I would understand her experience if she did. Others before me had not shown her that they could.
“I don’t have schizophrenia,” she said to me with hurt and determination. “I just really don’t think I do.”
I couldn’t tell her that she did.
Her symptoms were confusing, to me, to the attendings, to her family. The label of schizophrenia had been on her chart for years, as this was the best fit that could be made. But “most likely” isn’t good enough. She hated this diagnosis, it made her feel misunderstood. She told me she had spent her entire life feeling misunderstood, first by family, years upon years of insensitive remarks until she finally ran away from home.
From childhood, she had been called “crazy.” Then with the evolution of her unrelenting illness, being understood became something out of reach. It was the culmination of being told she would always need medications, of doctors who looked at her with overpowering concern, and spending her life in and out of the hospital. It is the ultimate feeling of being so misunderstood, so unseen by the world, that it is enough to make someone lose hope.
In retrospect, I look back and see that that her objection had been right. The diagnosis didn’t help her; it didn’t save her. She didn’t need a diagnosis; she needed understanding. She needed someone to look at her and see her as a girl, who had been fed shame like it was nourishment, and just wanted to be seen for the person that she was, not the illness. She needed someone to focus on the symptoms, not the label that we attach to them. This label didn’t fit and did not benefit her understanding or perception of her illness. In her case, it just became a weapon that others used against her. Proof that she was “crazy,” as her family had been telling her all her life. Sometimes a diagnosis is a relief, something that ends the painful wait of wondering what is wrong, what could be happening inside your body or your mind. In her case, it was a curse, a burden that she had to carry around with her, something obliterating her ability to hope.
In these cases, it is important to respect a patient’s experience of their illness and weigh the risks against the benefits of enforcing a diagnosis. It is impossible to look back and come even close to fully understanding her experience. While the opportunity still existed, I wish we would have tried.