by Leah McClimans, Ph.D.
In May of last year my mom was found unconscious in her apartment. She was taken to the emergency room with sepsis, and ulcers on her sacrum and heels. The sepsis was serious, but the ulcers were worse. Her clinical team had to debride them again and again. They got bigger and bigger. The ones on her sacrum were huge. Two enormous craters, vacant and gaping. She had to have a colostomy to ensure the area would stay clean, and various wound VACs were used to aid the healing process. But in the end, the surface area was simply too large. In July she had plastic surgery to close the majority of the wound. The surgery was successful, but 13 months later, my mom is still in care. Still recovering from these ulcers and the many, many set-backs that continue to accompany them, set-backs that include physical issues such as infections and antibiotic allergies, but also psychological and psychiatric issues.
How did this happen? How did my mom end up septic in her apartment with these ulcers? Well, my mom is one of the 46.6 million adult Americans who suffer from a mental illness. And similar to the majority of these Americans, her mental illness has gone undiagnosed and untreated for decades. For people like my mom, it is not unusual to end up in the hospital with a serious physical condition. People with mental illness experience disproportionately higher rates of disability and mortality. Mental illness increases the likelihood of avoiding or failing to follow-up with medical treatment. This is particularly true of chronic or other long-term conditions that require repeated interactions with the healthcare establishment. At the same time, living with, say, untreated diabetes or cardiovascular disease, tends to exacerbate mental illness. So my mom is not unique. Yet if her story is a common story, one that has been lived by so many others, why has it been so difficult to have her condition acknowledged by her clinical team?
When my mom’s health deteriorated sufficiently a few years ago, and we essentially forced her into the ER, I was relieved. “Finally!” I thought, “I can tell someone about what is really going on! She can get help. I can get help.” My mom has suffered from mental illness(es) for as long as I can remember. She is a hoarder (we lived with dirty cat litter in black plastic bags in the laundry room, refrigerators would rot repeatedly from the inside out, we didn’t have hot water because, I assume, she was too scared to let someone in to fix it because they would see the state of the house). But she also suffers from other issues. She lives in a quasi-fantasy world. She has had a series of implausible boyfriends who keep her from seeing her grandchildren when we visit. She also does not reliably pay her bills despite having the money to do so. She lies as often as she tells the truth, but doesn’t maybe always know the difference. When she went to the ER this first time, it was after a year of lying about her health and doctor visits. Yet, when I told some of this history to the clinicians caring for her, they were doggedly uninterested.
Most recently, my mom was found unconscious on a Monday morning, but the Friday before she had been to work as usual. In fact, for 20 years my mom has held down a 40-hour a week job. She also has a lot of friends—dedicated friends, friends who continue to visit and check-in on her. Numerous studies have linked mental illness with unemployment and homelessness as both a cause and a consequence. Incarceration, alcoholism, suicidal ideation and troubled relationships are also commonly associated with mental illness. In some (but not all) of these respects, my mom is different from others who suffer from mental health disorders. But these differences do not mean that she does not suffer from mental illness, nor that her suffering is not sufficiently serious to adversely, and seriously affect her health. Mental health care requires nuance.
Many of the clinicians who have cared for my mom have been fantastic at caring for her physical needs. Certainly, on multiple occasions they have saved her life. But they have been uniformly inept at helping her access mental health resources or information that will improve her chances of long-term health. They have also been terrible at simply talking with her about her mental health issues. In the beginning, I thought this avoidance was a communication difficulty—rotating clinicians, lack of continuity of care and so on, but based on a 2012 study it seems like part of a larger issue. In this qualitative study researchers found that internal medicine physicians uniformly discussed deficiencies in their training in treating mental illness in complex patients. Many did not see treating mental illness as part of their professional identity, and some found it difficult to cope emotionally with mentally ill patients. In fact John Campo, professor and chair of the Department of Psychiatry and Behavioral Health at The Ohio State University of Wexner Medical Center links the disconnect between physical and mental health care to our history of treating mental health in asylums, which were physically separate from clinics and hospitals. This point is reiterated in the UK’s 2017 study, Treat as One: Bridging the Gap Between Mental and Physical Healthcare in General Hospitals. In fact, the more I looked into this issue, I began to realize that hardly anyone thinks we’re currently doing a good job integrating mental and physical health care (although there are efforts to change this).
Perhaps I didn’t need to do any of this research. Last summer, in an effort to overcome the chasm that existed between my mom’s physical and mental health care, I started to call the hospital daily and explain the situation to every nurse, doctor and social worker who would listen. It didn’t work. But one nurse was blunt: “Your mother is not going to get mental health care here. That’s not what we do.” Apparently, and unfortunately for millions of Americans like my mom and their families, he was right.