We Are Still Fighting the Stigma of Borderline Personality Disorder

On a Time Magazine cover published on January 19, 2009, 13 years ago this week, the subhead read, “Borderline personality: The disorder that doctors fear most.” In 2009, there was still a substantial stigma within the medical profession toward people diagnosed with borderline personality disorder (BPD).

When I was diagnosed with BPD in 1990, I was 29. The psychiatrists at the hospital where I’d been admitted following my second suicide attempt told my parents the prognosis was poor and not to hope too much. I could imagine my parents’ feelings of devastation as all the hopes and dreams they had for me faded away like air escaping slowly from a balloon.

They resigned themselves to their daughter, the psych patient, as I was transferred to a long-term BPD unit at a well-known psychiatric hospital in Westchester County, NY. When I was transferred, no one knew what “long-term” meant. It turned out to be ten months, mainly because my insurance refused to pay for additional time. The treatment team believed I continued to be a danger to myself, so the plan was to transfer me to Creedmoor, a state hospital in Queens, NY.

I’d grown up in Queens, in the shadow of Creedmoor. The prospect terrified me and my mother, who stepped in refusing to allow that transfer. A compromise was reached, and I recovered in a 24/7 supervised residence while attending a newly formed BPD day program, an offshoot of the long-term unit.

Stigmas die hard and in the introduction to the anthology, Beyond Borderline: True Stories of Recovery From Borderline Personality Disorder, the late Perry Hoffman, founder of the National Educational Alliance for Borderline Personality Disorder (NEABPD), wrote:

Seldom does an illness, medical or psychiatric, carry such intense stigma and deep shame that its name is whispered, or a euphemism coined, and its sufferers despised and even feared.

Perhaps leprosy or syphilis or AIDS fits this category.

Borderline personality disorder (BPD) is such an illness. In fact, it has been called the 'leprosy of mental illnesses' and the disorder with the surplus stigma. It may actually be the most misunderstood psychiatric disorder of our age.

As recently as last year, at my previous job, I sat in our clinical rounds and listened to the derisive comments spoken by psychiatric professionals at all levels regarding our clients diagnosed with BPD. The meetings were virtual and part me of wanted so much to unmute my mic, call them out and disclose my history and wait for the fallout.

But I didn’t. I stayed silent.

After I resigned, I told co-workers and former supervisors about my history and about my entrepreneurial venture BWellBStrong. They were surprised to learn I’d once been diagnosed with BPD. I guess I didn't fit their idea of someone who they pictured with the constellation of BPD symptoms.

Many people familiar with BPD, to whom I disclose my history, are surprised. I think the stigma persists that once diagnosed with BPD, some symptoms endure, such as the inability to sustain full-time employment and difficulties in maintaining successful relationships (not necessarily romantic).

Unfortunately, the stigma continues that a person diagnosed with BPD, even those of us who have gone through treatment, are still not able to become fully functioning members of society.

I hope I am doing my part to fight the stigma by writing openly and honestly about my psychiatric illness and history. Is it appropriate to disclose to everyone I meet about my history of BPD? It’s not shame that holds me back or what they think of me. If I have a fifteen-minute appointment with my hematologist to discuss my anemia, do I tell him I have a history of BPD, anorexia, and major depression? No, I don’t think so.

On the other hand, my headache specialist, who I’ve been working with for over seven years, knows. I don’t recall exactly when I felt comfortable enough to disclose my full psychiatric history to her (it makes it easier that she is board certified in both neurology and psychiatry), but it took several years. The time just felt right, and she was surprised. We have a great professional relationship now, built on mutual respect.

There’s been a movement to change the name of borderline personality disorder, in part because the name in itself is stigmatizing.

Recent surveys of clinicians and patients provided the following names as possible suggestions when renaming borderline personality disorder:

• Emotional regulation disorder
• Emotional dysregulation disorder
• Emotional intensity disorder
• Emotionally unstable personality disorder
• Impulsive personality disorder
• Impulsive-emotional dysregulation disorder
• Emotionally impulsive personality disorder

Of those, emotional regulation disorder was the most popular among clinicians, and emotional intensity disorder was the most popular among patients.

Lois W. Choi-Kain, director of the Gunderson Personality Disorders Institute at McLean Hospital in Belmont, Mass., said,

If anything needs to change, it’s the attitude toward the disorder, not the name. I don’t think the term itself is pejorative. But I think that associations with the term have been very stigmatizing. For a long time, there was an attitude that these patients could not be treated or had negative therapeutic reactions.

According to Michael A. Cummings of the department of psychiatry at the University of California, Riverside, "In many ways, I don’t think it is even a personality disorder. It appears to be an inherent temperament that evolves into an inability to regulate mood."

With the right treatment and the right therapist, we can and do fully recover. Access to the intensive treatment that is needed continues to be a barrier. I agree with Choi-Kain when, in response to the statement, data suggests that BPD patients are highly prevalent in clinical settings, she said, “And I interpret that as them seeking the care that they need rather than resisting care or not responding to care."

Thanks for reading.