Mother and Daughter

In 2008, the U.S. House of Representatives unanimously passed House Resolution 1005 supporting May as Borderline Personality Disorder Awareness Month. The Resolution stated that “…it is essential to increase awareness of BPD among people suffering from this disorder, their families, mental health professionals, and the general public by promoting education, research, funding, early detection, and effective treatments…”

May is also Mental Health Awareness Month, a time to reflect on far too many people across our land who struggle from mental illness. For some, devastating as it is, a recognized diagnosis like schizophrenia can thankfully lead to a sphere of treatment and help. Borderline personality disorder (BPD) is not as well known but is more prevalent – and is wreaking havoc on families and communities, while receiving less acknowledgement by mental health professionals and awareness by the public.

We are mothers of children who suffer from borderline personality disorder (BPD) and have devoted much of our energies to helping them cope with this awful mental illness. We have watched our children become sidetracked from their tremendous potential for achievement and even lose hope in their dreams for the future. We have agonized over their profound pain – while trying to shepherd them through heightened challenges with school, work, friends, family, therapists, and co-occurring mental and medical illnesses. We have wondered if we are any help at all when trying to maintain equilibrium in our families amongst the dysphoria that weaves into the fabric of BPD life. And we have come to understand that this disorder – in spite of its name — is not a personality flaw, but rather a brain disorder. Little by little, we have also learned that there are some answers ….

It is important to know that BPD is prominently featured by intense and highly changeable moods, distorted self-image, impulsive and often dangerous behavior, and unstable interpersonal relationships. Self-harm and suicidal behavior are also features of BPD; alarmingly, there is a high suicide rate of 10%. Combinations of these features can lead to crippling difficulties: a day is rarely calm or predictable; sleep is not restful; and there is little time off from the turmoil.

In the meantime, BPD is underdiagnosed and misdiagnosed. As a result, we don’t know the real number of our neighbors who have BPD. Its prevalence in the general population is estimated to be 1.6% but may be as high as 5.9%. For example, many people who actually have BPD are misdiagnosed with bipolar II disorder. Community mental health centers, hospitals, and prisons are overwhelmed with people who have symptoms of this disorder – and could be identified as having BPD but remain undiagnosed. Without urgently needed understanding, accurate diagnosis and subsequent treatment, BPD will continue to cause heavy public health burdens.

The good news is that evidence-based treatments have produced positive outcomes in recent years thanks to many excellent therapists and researchers and – with a lot of therapeutic work –mitigation, remission and recovery are possible. And the word is spreading!

However, prevailing ‘wisdom’ over the years had deemed BPD as untreatable and high-risk. Broad-scale success has been hobbled by the mental health community’s many years of shunning people who present with BPD symptoms. The professional stigma persists today. In addition to impediments to getting treatment, BPD research has been chronically underfunded. There is a huge gap in government (National Institute of Mental Illness) funds for BPD compared to other serious mental illnesses. For example, BPD receives only 1/50th of the funds allocated to schizophrenia despite BPD’s higher prevalence.

What a hopeful moment it was when Congress established May as Borderline Personality Disorder Month! Nevertheless, 13 years later, families still struggle to find an accurate diagnosis and accessible, effective treatments. Without these, a satisfying mental and emotional life for those with BPD remains elusive.

As mothers we are very concerned about the gap in funding of this disorder and the decline in the number of researchers studying BPD. Consequently, we formed a grassroots group, Families for BPD Research, to support young researchers investigating underlying biological causes. Our most fervent hope is that research will shed light on this devastating disorder, leading to insights that could improve the quality of life for those who suffer so unfairly.

Our message, front and center, is that BPD is a public health issue. It urgently needs recognition, understanding, and destigmatization by each of us, and crucial attention by social services, health care, scientific research and more. This is for the well-being of our children, ourselves, and our citizenry — and the compelling need to thrive together in a mentally healthy environment.

The writers are co-founders of Families for Borderline Personality Disorder Research.