Photo credit: scientificanimation
Borderline Personality Disorder (BPD) affects nearly 6% of Americans at some point in their lives, but research, treatment, and support for the condition lags far behind other serious mental illnesses. Paula Tusiani-Eng and her parents know first-hand what it’s like to live with, and eventually lose, a loved one suffering from BPD. Their story is remarkable not just because of those challenges, but because of what they decided to do next.
Paula Tusiani-Eng lost her sister Pamela in 2001—but not, as you might expect from the subject of this post, to BPD. Pamela did suffer from Borderline Personality Disorder, but her death was caused by medical malpractice: she was administered a mistaken drug, which caused a rare and fatal kind of stroke.
While such malpractice is an extreme event, the lack of appropriate care for BDP remains alarmingly common. This is in part because the condition itself is poorly studied and often misdiagnosed. Pamela experienced multiple hospitalizations and reached the point of self-harm before receiving her diagnosis; her family had to struggle greatly even to learn what the condition was.
[Let’s pause here and address that. To quote the National Education Alliance for Borderline Personality Disorder: “BPD is a serious mental illness that centers on the inability to manage emotions effectively. The disorder occurs in the context of relationships: sometimes all relationships are affected, sometimes only one. It usually begins during adolescence or early adulthood.”]
BPD was only officially codified as a medical condition in 1980. Treatments began to emerge in the 1990s, but were not widely available until quite recently. Many insurance plans still deny coverage for the disorder.
While this interview is striking for its account of what Pamela and her family experienced, it’s even more so for the account of the advocacy and organizing they’ve taken on since. That effort culminated in two great projects: a memoir, Remnants of a Life on Paper, partly composed of Pamela’s journals and her parents’ exhaustive notes and records; and Emotions Matter, a nonprofit organization dedicated to supporting, educating, and advocating for people living with BPD. It’s a long but deeply inspiring conversation with a family that did not let grief and loss stop them. “Trust yourself, don’t give up on yourself, and look for a purpose,” Paula asks of PBD sufferers. She and her parents have taken this advice to heart.