They Say

They come to see me, asking for help from a psychiatrist.

The words ring in my ears. Years of suffering, years of not being able to pursue dreams—because this kind of suffering, for these people, is not recognized as part of an illness. On the basis of my experience as a physician and my clinical knowledge about evidence-based treatment, I have reasonable hope that treatment can help. I think about the reports of grandmothers, mothers, and aunts and the grandfathers, fathers, and uncles suffering in the same way. Family history often influences behavior, and help is not always offered. What had they missed out on? What were the lost opportunities—education not attained, occupations not pursued, relationships broken?

These interactions remind me of my own story. I was 7 years old when I first heard the words “Your mother has cancer.” Ovarian cancer, to be exact. That was the cause of the pain—pain she had been dealing with for close to a year. She was 34 years old with two small children and a life that was just beginning to go right. My mother had worked several part-time jobs, including as an administrative assistant, child care provider, and flight attendant, while my father was overseas. After my father came back from service in Vietnam, they succeeded in having children after years of disappointment and happily settled down. It was her turn to pursue an education to fulfill her passion for helping people; she had just started classes toward a master’s degree in social work when the pain started.

My parents told my brother and me right away when she was given a diagnosis. “We don’t want it to be a secret,” they said. I learned later that my grandmother’s breast cancer had been kept secret from my mother, still a teenager, until my grandmother was only months away from death. My mother remained angry through adulthood that she did not have more time to support her mother and to grieve with her as she was dying. My grandparents had not told anyone that my grandmother had cancer. It was something to be hidden and not discussed. My parents took another approach with my mother’s diagnosis—they did not hide it. My brother and I were kept informed every step of the way. Three years later, my mother passed away in hospice, a new form of care dedicated to providing dignity for patients at the end of life.

I was 16 years old when I heard the words “You’re at risk.” Familial risk for cancer was just beginning to be understood. The physician explained that my risk was high because it was not only my mother who had cancer, but also my grandmother and other relatives, with related types of the disease. He explained what was known at the time about the links between hereditary breast and ovarian cancers, dispelling a family myth that my mother’s and grandmother’s cancers were both due to living in the western United States during nuclear testing. Many other affected family members had not lived in Texas during that time. When another close family member developed ovarian cancer several years after my mother’s death, we talked as a family and were enrolled in a trial to determine possible genetic causes of our increased familial risk. A deletion in the BRCA1 (breast cancer 1) gene was discovered in some family members. For the first time, we felt empowered, knowing for sure why female members of our family had developed cancer. Members of my generation could get tested if we chose to. Because we had overcome secrecy, recognized the risk, and sought medical advice, we had a choice between inaction and action—including paying more attention to exercise, diet, and early warning symptoms; increased surveillance; and prophylactic surgery.

As it turns out, my family history is as riddled with mental illness and alcoholism as it is with cancer. In the past two generations, while we told our cancer story, mental illness and addiction were hidden. I learned that for generations—many more generations than those affected by cancer—members of my family have been affected by mental disorders. I have heard stories only piecemeal. In each story, the behavior came with an explanation: “It was just the way it was back then; that’s just who they were.” “He drank because he did not have a job.” “She was crazy because she was stuck on a farm having children.” “It was due to the war; he lost his wife.” As I pieced together the stories, I saw patterns and realized that the tragedy was worse than I had known. The secrecy, the hushed conversations, and the excuses might have prevented many from getting help and breaking free. Some family members were very open and acknowledged risk, but others were not and did not. Some members of the family were warned, but others were not. Some family members took precautions to minimize risk, but others did not. The secrecy that had surrounded my grandmother’s breast cancer diagnosis in the 1960s likewise surrounds the history of mental illness and alcohol addiction in parts of my family to this day. Time after time, people affected within my family have hidden themselves in order to hide their suffering. They have withdrawn from the world, which has repeatedly led to tragic consequences.

To live with mental illness or addiction is painful, but to seek help remains harder than for people with other diseases because mental illness and addiction are so often perceived as a personal flaw or as behavior due only to circumstance. Stigma is only one barrier to care faced by people with mental illness and addiction. Sometimes, people do not recognize that they need care because of the psychiatric illness itself, or they realize it but cannot access the care they need. Psychiatric services are not available in many places, especially in rural and underprivileged communities. Services are often inaccessible because of cost, lack of transportation, and lack of child care or elder care during appointments. Additionally, people with mental illness and addiction may fear involuntary treatment, especially if they have witnessed family members or friends receiving such treatment. At times, stigma within medical settings surrounding mental illness, addiction, trauma, and socioeconomic disparities can cause patients to have terrible, traumatizing experiences with care, preventing them from wanting to seek care in the future. My family members have experienced the negative consequences of stigma and lack of access to care and perhaps other barriers that I do not know about. In our family, people who did not receive treatment have experienced homelessness, institutionalization, loss of jobs, estrangement from family, self-isolation, adverse consequences of untreated medical illness, death from complications of alcoholism, and death by suicide. Family members who have sought treatment have been able to preserve relationships and jobs and have led fulfilling, productive lives.

How I wish there were a personalized, predictive test for mental illness and addiction so that we would have one more way to help families recognize these terrible afflictions as treatable diseases and could take action, just as we now can when faced with a BRCA gene mutation. There is promise from rapid advancements in neuroscience and genetics—but, sadly, we are not there yet.

Sitting with my patients in my office, I run through the differential diagnoses for the symptoms in my mind. I decide on the most likely diagnosis and discuss treatments, risks, and benefits. Most patients are willing to try treatment. We discuss how to navigate maintaining close relationships with family members who disagree with seeking medical care. They walk out of the office with a prescription; knowledge about the roles of nutrition, exercise, sleep hygiene, and evidence-based psychotherapy; and a treatment plan. “I’ll come back, and I’ll take the medication, but I’ll hide my pills,” they say. “And I won’t tell them I’m coming to see you.”

Over time, I hope they will be open about their diagnosis and encourage others to seek treatment. I hope I can do the same for my family members every time they are in need.