The Other Eleven Months of the Year
-Non-Fiction by Andrea Rosenhaft –
I was diagnosed with borderline personality disorder (BPD) in 1991 at thirty years-old, following my second suicide attempt. Individuals who have BPD lack the ability to manage their emotions and thoughts effectively. Emotion dysregulation can lead to impulsive behavior and unstable relationships. The stigma BPD carried then was formidable and the prognosis so poor that the team of psychiatrists that broke the news to my parents told them not to hope for much. I’d already been diagnosed with major depression and anorexia, for which I’d been psychiatrically hospitalized twice after starving myself until my body resembled a skeleton. Both depression and eating disorders are common alongside borderline personality disorder.
Today the prognosis for people who are diagnosed with BPD has dramatically improved as long as clients participate in an evidenced-based treatment program. The current thinking is that BPD develops as a result of biological, genetic and environmental (where/how the person was raised) factors. BPD was thought to be caused by trauma and/or an invalidating environment. The environment still plays a role; more recently, various studies have shown that people with BPD have differences in both the structure of their brain and in brain function.
In the introduction to the anthology, Beyond Borderline: True Stories of Recovery from Borderline Personality Disorder, published in 2016, Perry Hoffman, Ph.D., President and Co-Founder of the NEABPD (National Education Alliance for Borderline Personality Disorder) 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 is such an illness. In fact, it has been called the “leprosy of mental illnesses” and the disorder with “surplus stigma.” It may actually be the most misunderstood psychiatric disorder of our age.
When I was first diagnosed, my family and I felt stranded. We’d never heard of borderline personality disorder, there was no widespread source of information, no organized list of resources and no Internet. My mother suffered right alongside me, terrified that I’d make a successful suicide attempt. She didn’t live to see me recover. She was diagnosed with advanced pancreatic cancer in December of 2002 and passed away three months later. While getting her affairs in order, she purchased a cemetery plot for herself and one for me alongside her. I didn’t say anything, but I believed she assumed either I’d never get married or I’d eventually succeed in killing myself.
Marsha Linehan, a psychologist from the University of Washington introduced a new type of treatment in the late 1980’s and early 1990’s developed specifically for individuals diagnosed with BPD. She called it Dialectical Behavior Therapy (DBT). Many of the principles are borrowed from Buddhist concepts and in DBT the client learns and practices Zen techniques woven in with targeted coping skills.
I originally entered therapy at twenty-three. I’d never had a boyfriend. I was ashamed to tell anyone and sometimes I made up one or two, but I started getting their names mixed up. I knew something was amiss, but I had no idea what. When I thought about what I’d talk to a therapist, about, the only thing I could come up with was that I was still a virgin at twenty-three and I was too embarrassed to tell anyone that.
I was playing softball in the N.Y. Advertising Co-Ed Softball League and we’d party at a bar on the Upper East Side of Manhattan after games two or three nights a week. A friend introduced me to cocaine and I was immediately hooked. This magic powder imbued me with the ability to flirt. I became a different woman, suddenly capable of conversing easily with men, laughing, smiling, even squeezing a well-developed bicep.
In the four years I worked with my first therapist, Nicole, she unleashed a tsunami of feelings; an unconscious rage and resentment she was unequipped to handle. Naïve and trusting, I believed the internal torture I endured daily was something everyone went through as a part of therapy. I remained silent because I lacked the vocabulary to describe my demons. Instead I resorted to starving and cutting myself to achieve an inner calm. The pale scars remaining on my upper arms and forearms serve as a quiet but constant reminder.
I made my first suicide attempt during the second year I was seeing Nicole. Early one morning it was still dark outside and I felt as though I was drowning. The blood stained the cream-colored comforter sprawled across my bed. I told no one. When I cut my wrist during that attempt, I experienced an odd euphoria. Trying to hold onto the ecstasy, I created an elaborate ritual of cutting that always took place in my bathroom. As I initiated this ceremonial-like sequence of steps with a trip to the store to buy straight-edged razor blades, my body tingled all over with anticipation.
Even though I didn’t reveal the suicide attempt to Nicole, it became impossible to hide my deepening depression. She referred me to a psychiatrist for medication. He reminded me of pictures I’d seen of Freud. I’d learn later the medication he prescribed for me was not an antidepressant, but a stimulant. It was easy to ditch my addiction to cocaine and succumb to becoming a mistress to the speed, prescribed by this ancient psychiatrist.
The pills numbed my appetite a lifelong dream of mine. I lost weight. A lot of weight. I made love to the sharp edges of my bones, caressing them, as they jutted out from my shrinking body. The high that flowed through my malnourished body as the numbers on the scale dropped, made me feel alive, while in reality I was dying. Nicole watched me silently, as though I was some sort of freak show. My first two psychiatric hospitalizations for anorexia followed, a year apart, the second one just months before being diagnosed with BPD.
In Westchester County, N.Y., there is a division of New York Presbyterian Hospital devoted solely to psychiatric illness. In the early 1990’s there were two long-term units (1 – 2 years) reserved for treating BPD. One followed a specialized form of psychodynamic psychotherapy and the other, which had just opened, utilized DBT.
After my second suicide attempt, an overdose, I sat locked in limbo for six weeks in a psychiatric hospital, high above Lexington Avenue in New York City. It was on this unit the psychiatrists decided I’d be appropriate for the long-term unit which utilized DBT at New York Presbyterian Hospital in Westchester. Waiting for a bed to open up on the DBT unit, I passed the time gazing out of the grate-covered windows, ten stories up, at the daily Manhattan traffic jams.
When I finally got to this unit of mostly women who had all been wounded in one way or another, I felt safe for reasons I was incapable of comprehending. The chaos that had been constantly swirling around in my mind slowed down and I felt better able to tolerate the bedlam that remained. These woman became my sisters — the sisters I never had — and every evening after dinner, we hung out in the common room, sprawled out on the couch and the floor. Listening to each other’s deepest secrets and horrific stories without judgment, I learned what a real relationship was. When my insurance refused to pay after only ten months, I was devastated. The chief psychiatrist feared for my safety and wanted to send me to a state hospital. My mother stepped in, declaring that “no daughter of hers was going to a state hospital,” and an alternate plan was put into place. The insurance company agreed to pay for my discharge to a 24/7 supervised residence and an outpatient DBT day program the hospital had just opened.
DBT is not the only modality that has been shown to help. There are several evidence-based treatments, including mentalization-based therapy (MBT), good psychiatric management (GPM) and schema-focused therapy (SFT). After practicing the skills of DBT for years, I slid, ungracefully into another lesser known treatment for borderline personality disorder known as transference focused psychotherapy (TFP).
BPD is at the heart of an alphabet soup of illness and its treatments. The acronyms rolled fluidly off my tongue as this became my world. BPD, DBT, TFP, MBT, GPN, SFT were names in a secret language among a select few. As my universe opened up, so did my vocabulary. I saw possibilities in crafting words, sentences and paragraphs rather than snippets of acronyms. I signed up for a writing class at a local center. Putting words to paper about my experience was cathartic. When my essays began to get accepted for publication, I wondered if I had permission to call myself a writer. The “patient” identity I’d carried with me for most of my life gave way to a “writer” identity. While the patient identity had been all consuming, my writer identity fit neatly into other parts of my life. Along with those, which included friend and sister, I gradually found room for a fuller and increasingly productive way of living.
I credit TFP with saving my life. I learned from my relationship with Dr. Lenox, who was also a psychiatrist and a psychoanalyst, about how I interacted with others. My relationship with her in a variety of situations echoed those I encountered outside the therapeutic office. I’d put my mother on a pedestal in the same way I put my therapist on a pedestal. Eventually, I came to realize both were human with positive and negative qualities. My father passed away in 2013. The years of work following his death were the most intense. Battle scarred, I finally freed myself of the anger and resentment I’d harbored towards him for most of my life. I mourned the little girl in me who would never please him.
I labored to navigate the emotional ruins left by my father’s death and simultaneously, my relationship with Dr. Lenox took twists and turns, and at one point stalled altogether. I fired her, she took me back. Finally, I was able to acknowledge anger towards her that I’d repeatedly denied. I looked at her and whispered “I hate you.” Whatever evil I spewed, she assured me she could take it. I’d been terrified if I revealed the depth of my rage to her, she’d reject and, then abandon me.
The course of my illness was extended and rocky because I wasn’t diagnosed until I was thirty. Until I was immersed in TFP, no one had been able to gauge how severely ill I was. It’s not that I wish I’d found TFP earlier; I learned many of the coping skills from DBT to keep myself safe from cutting and other self-destructive behaviors during the intense work of TFP. I still use many of my DBT skills, such as radical acceptance, mindfulness and wise mind. They’re skills for life.
I consider myself fortunate as I was able to navigate the cost of prolonged treatment. When I was first diagnosed and hospitalized on the long-term unit, managed care didn’t exist, so insurance covered my ten-month stay. The psychiatrist I saw for TFP did not accept insurance, however she was generous in adjusting her fee to my current financial situation as we proceeded through treatment. At times she allowed me to carry a balance, trusting that I’d pay her when I was able. I also had financial support from my mother and after she passed away in 2002, my brother continued to assist me.
BPD requires specialized treatment such as DBT or TFP and therefore requires specialists in these (or other) modalities. Regardless of the modality chosen, the therapeutic alliance is the critical factor in determining the success of the treatment. Individuals diagnosed with BPD don’t trust easily, we have no concept of a “safe space.” To establish these takes time and a competent provider. Someone to manage our outbursts, our suicidal ideation and our expressions of self-loathing.
A specialist has the ability to give us our lives back in the same way I worked to secure mine. It’s time that insurance companies wake up and realize that with BPD, it pays to reimburse highly skilled providers at a rate which is on par with their training and expertise. The insurance companies incur savings when we stop needing to use the hospitals and emergency rooms on a frequent basis. I lost count after twenty psychiatric admissions; then had a five-year hiatus when I became securely ensconced in TFP.
Symptom reduction is a half-victory; reimbursement for intensive treatment needs to be the standard so achieving full lives, complete with sustained employment and relationships is a realistic expectation.
Borderline personality disorder does not deserve the stigma it’s acquired. We are not ‘manipulative’ or ‘attention seeking.’ We are hurting, our inner world fluctuates between chaos and emptiness and we don’t know how to tell you what we are feeling. No words exist. We are scared if we do manage to let our mothers, our friends or our significant others into our worlds, they’ll walk away. We imagine we’ll be alone forever. One of our biggest fears is being abandoned.
The month of May has been designated as Borderline Personality Disorder Awareness month. In each year, eleven months remain as we continue to be diagnosed, seek treatment and work in therapy. For the rest of the year and into the following year we continue to aim towards the life all of us dream is possible.
We can and do recover. We can and do lead lives that include careers, spouses and children. We leave cutting and suicide attempts behind. We leave hospitals and therapy behind.
Thank you to everyone who helped make my life a fulfilling one, so I may show others recovery is possible. So I may offer others the precious gift of hope. Though hope may have been lost, it can be remembered again.
About the Author – Andrea Rosenhaft
Andrea Rosenhaft is a blogger and published writer, primarily on the topic of mental illness and recovery. Her work has appeared in “Intima,” a literary journal of the Columbia University School of Narrative Medicine, and the anthology “Beyond Borderline: True Stories of Recovery from borderline Personality Disorder.” Andrea has been working as a licensed clinical social worker in the New York City area since 2000. She is searching for an adorable rescue dog to adopt for long walks during the day and to snuggle with at night after being owned by her cat, Zoe for sixteen years.
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