Miranda Newman is the author of the new book Rough Magic: Living with Borderline Personality Disorder, from which this essay has been adapted.
“What are your recovery goals?” my therapist asked me during our first session to treat my borderline personality disorder (BPD) in 2018.
“What do you mean?” I asked.
“What are some of the things you’d like to work on during our time together?”
It was a question that was both simple and daunting. My goal was to feel better. But I couldn’t picture what that looked like. The details were blurred.
How could I describe a life without an illness I’d always lived with? It’s like asking a person who summoned the courage to hop on a train heading to parts unknown to describe their destination. They might be able to provide broad details like “west” or “the city,” but they wouldn’t be able to name the local flora or tell you the best bar in which to drown your sorrows. Still, I don’t fault my therapist for asking about my recovery goals. Because, like the choice to hop on a train, the contemporary understanding of recovery is that the motivation to heal has to come from within.
So, what does recovery from a mental illness look like? The U.S. Substance Abuse and Mental Health Services Administration offers the most detailed picture. Recovery is a “process of change through which individuals improve their health and wellness, live a self-directed life, and strive to reach their full potential.” Recovery is supported by secure housing, healthy relationships and the pursuit of meaningful activities.
But recovery is a recent option for people with BPD. Historically, people with the disorder were seen as treatment-resistant or unlikely to improve over time. However, timely studies demonstrate that symptom remission occurs in 33 per cent to 99 per cent of people with BPD who receive treatment. Some symptoms associated with the disorder improve even without therapy.
Mental-health recovery models date back to at least the seventh century. One of the oldest recovery-oriented communities can be found in Geel, Belgium.
The legend begins with Dymphna, the Christian daughter of a pagan king from modern-day County Tyrone, Ireland. Dymphna took a vow of chastity to underscore her devotion to her religion. Her father became mad with grief after her Christian mother’s death. His advisers insisted that he marry again, but he would only do so if they could find a bride who was as beautiful and devout as his deceased wife. When no such woman was found, the king turned his eye in the direction of his daughter. Dymphna fled to what is now Geel, where it’s said she used her largesse to establish a hospice for people with mental disabilities. But her father used his fortune to track Dymphna down. On May 15, between 620 and 640, he beheaded his 15-year-old daughter in the forests of Geel, effectively martyring her.
In the mid-14th century, a church was built at her burial site. Rumours spread that people with mental illness who visited it were cured of their symptoms. People made pilgrimages to the small village in hopes they would be healed. It became a haven for people with mental illness. And Dymphna was its patron saint.
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In 1480, a hospice was built close to the church but filled quickly with people seeking relief. Townspeople and local farmers took in pilgrims in need of shelter. A custom was formed and so began a family foster-care program that’s still in place nearly 700 years later.
The people who came to Geel for help were referred to as “guests” and not “patients.” Guests were paired with a suitable family after a brief period of observation. They were free to participate in the community and contribute to their host household as much as they were able to. Today, the community-driven initiative is an important part of the care the local psychiatric centre provides. The average stay in the foster program is 30 years. Though the number of people staying with foster families has dropped – because of more resources that allow people with mental illness to live independently – the World Health Organization considers Geel “one of the best examples of how communities can become carers of the mentally ill.” Geel’s secret to success? The community acknowledges each guest’s needs will be different and responds accordingly. More importantly, the families of Geel accept their boarders for who they are and not what they want them to be. Belonging and acceptance, it seems, are at the heart of recovery.
For people with BPD, recovery can seem unreachable because of the rate at which we drop out of treatment. According to the American Psychological Association, people with BPD quit treatment programs about 70 per cent of the time. Why are dropout rates so high? People with BPD have difficulty maintaining interpersonal relationships and trusting others, which can affect their relationships with therapists. Reasons for dropout included a lack of motivation, dissatisfaction with treatment, or expulsion.
Complicating matters, treatment for BPD is scarce and expensive. A study based in the Netherlands found the yearly cost to treat a person with BPD was approximately $25,000 in 2000, twice as much as it was to treat depression. Studies from the U.K. note that specialized treatment programs are routinely underfunded and undersupported. The probability of a treatment team persisting more than 10 years is less than 50 per cent.
In Canada, mental-health care in the country began to pivot toward recovery-oriented care with the development of the Mental Health Commission of Canada in 2007. The federal government recognized the right of people with mental illness to fully take part in society in 2010 when it ratified the United Nations Convention on the Rights of Persons with Disabilities. This led to the Accessible Canada Act, federal legislation that aims to create a barrier-free country by 2040.
Mental health is recognized as a fundamental aspect of overall well-being, but the Canada Health Act doesn’t consider the majority of mental-health services offered in the country “medically necessary.” This means treatment costs aren’t covered under health plans. Recovery can be expensive and, as a result, inaccessible.
In their reasoning for publishing Beyond Borderline: True Stories of Recovery from Borderline Personality Disorder, editors John G. Gunderson and Perry D. Hoffman refer to BPD as the “leprosy of mental illnesses.” The stories contained within the 2016 book are intended to combat myths about the disorder.
Common to so many stories within the book’s pages is the agony people with BPD experienced while trying to get their symptoms treated – the stigma, the uncertainty, the misdiagnoses. So much of their recovery journey, and mine, involved educating loved ones and medical professionals about the nature of their diagnosis.
Perhaps that’s just the reality of recovering from BPD. But, maybe, if we tell our stories often enough and if we underscore our ability to recover, we’ll be able to skip all that labour and focus on healing.