*Editor’s note: video contains references to self-injury and suicide.

I’d like to share with you a speech I gave at the National Institute of Mental Health in Bethesda, Maryland back in October, 2010. I was surprised and flattered to learn this talk had made it on the homepage of NIMH, and doubly surprised of the subsequent outpouring in positive feedback. Thank you so much!

This has been the most difficult talk I had to prepare. As much as I am an advocate, I am for the most part a private person, wanting to protect those I love from the public light. At the same time, however, I know that the vulnerabilities I talk about in my own life often echo in the lives of many others. The story of borderline personality disorder isn’t easy, rarely simple and often not talked about. If we are able to give voice to this conversation and the new reality of borderline personality disorder in our own unique way, maybe it allows others the opportunity to take that first step in acceptance, change and healing.

Special thanks to the NIMH, the NEABPD family, and my speaking coach Marianne Gobeil.

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Transcript:
I know I am here to share with you my story living with borderline personality disorder, but first I want you to tell you about a woman named Heather, and how someone I’ve never met – and never will meet – has changed the trajectory of my own story.

Something moves me to listen closer — deeper — to her story, her voice; these are her words: Teach me how to live…

After all the drugs, alcohol, abusive relationships, after sobering up and going back to school, after all the meds and misdiagnoses, and still not getting better, after all her efforts Heather made one final attempt.

She asked of her counselor, “Can you teach me how to live?”

Four months later, in the winter of 2009 Heather became another statistic. Like me, she is one of the 75% living with BPD who attempt suicide. Tragically, she is also one of the 10% who die by their own hands.

It is staggering: BPD has a suicide rate that is 400 times the national average.

Her life is a tragedy, not only because she has left behind her two young children, not only because her diagnosis was with-held, but also because she tried so hard to get people to listen — her whole life restless to find something, someone, that will teach her how to live.

I cannot help but wonder how I am able to survive this debilitating disorder while others have not. I have been there too, wondering what happens when you don’t know how to love yourself… What happens when ordinary objects become weapons and subway tracks lure you into salvation? What happens when four glasses of whiskey are the only way you know how to sleep and your waking days are spent hiding in bathroom stalls, creating nooses out of belts?

To my family, to my friends, to you — to those I cherish, those who were there when I couldn’t love myself, I thank you for loving me anyway. Your love kept me alive when I couldn’t survive on my own.

But your love wasn’t enough.

I thought love would heal me. I thought faith would restore me. I thought hope would find me. And maybe it did. Maybe it kept me alive, but fifteen years worth of internal contortions, intense pain, and battles that raged on in the privacy of my head were no match for the virtues I tried so desperately to cultivate.

Three years ago, after an intense, heart-breaking revelation, a realization that contradicted my current reality and crumbled whatever facade I had built, three years ago I began to destroy the one thing that had kept insanity at bay: My marriage.  My marriage began to crumble and yet you still loved me.

For you were my friend who peered into my eyes, saying you still believed in me.  You were my brother, knocking on my door late at night to see if i was doing okay. You were my mom and dad, insisting love above all else, no matter who I was and where my life would lead me. Finally, you were my husband, with tears streaming down your face, willing to let me go
if it meant my happiness. But your dear, tender, compassionate love. It wasn’t enough.

And that’s when it happens.

When all the love in the world tries its best to keep you afloat and still, love is not enough, you find yourself standing on a ledge,  so afraid to hurt the ones you love even more and at the same time unable to tolerate the torment of a person you have become.  And you ask, over and over: When love seems to fail, where is the answer?

Even in the best conditions, love is not strong enough to take on the gripping, thorny reality of an untreated and undiagnosed illness.

We want to live. And the majority of us are willing to learn a new way.  After fifteen years of therapy and medications, there, in the psychiatric unit of a New York City hospital, I received a diagnosis I have never heard before. Out of the 9 symptoms of Borderline Personality Disorder, I had 8 of them. It was only after receiving treatment specific to BPD that I began to learn how to live.

Living did not come naturally to me. I had to learn things that seemed foreign to me, emotions that had actual names. Life, to my surprise, had structure and I was able to weave myself around that structure.

It was only then that I was able to open myself to a love that healed, a faith that restored and a hope that I could share with others. But, you see the thing is, I’m only one person. and there are 18 million others out there just as well, we, of the living, wishing not to suffer in vain. There’s hope, but the hope isn’t turning into action fast enough.

Because even though there is a new reality, a new cause for hope; that there is treatment and people can learn to live and do get better — there still is the bitter reality of our suffering. People wait months, even years for spots to open up at local hospitals in order to receive treatment that works. People can’t afford private treatment when they’ve been out of work. People are yearning for support across the country and around the globe desperately seeking others who understand a suffering that seems to be etched in stone and forever shapes our future. They all ask us — in one way or another, to anyone who will listen:

Please, teach me how to live.

It might be too late for Heather, but I made a promise to her mother that she did not die in vain. For her and countless of others who have lost their lives; may their deaths serve as a call to work for those who are still alive but barely living.

To those who fall to their end; to those who feel they have no more options; to those who live in a body that conspires against them; they need to know that no matter how desolate you may feel how hopeless a situation may be, no matter what has been done, it does not define us completely. Even in our darkest hours of despair, in our sorrow and confusion and fear, we — BPD and all — can never be thrown away.

And so let us dedicate our lives to this, to this unfinished work. Let us find something that moves us to listen closer, deeper to the story of borderline personality disorder. Teach us how to live.

Thank to NIH and NEABPD for allowing me to speak to you  today. And thank you for teaching me how to live.

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Editor’s Note: Helen Coffey is a mother I met during my talk at NAMI DC. Her daughter’s story has left a great impression on me; her words of desperation continue to echo in my mind. Helen has been gracious enough to share her and her daughter’s story so that others may learn about the reality of an untreated diagnosis. Thank you to Helen and to Heather. I promise to give her a voice — to help all of those who survive from day to day, all those still alive but are barely living. _____________________________________________________________

The day my daughter, Heather, died I wanted to destroy everything in this world that had hurt her. When the phone call came, I went into a rage. I was so angry at the doctors, insurance companies, employers, ER’s, police, law makers, rehabs, and certain individuals, but most of all I was angry at myself.

I have to admit that I was angry at Heather and God. I screamed over and over, “Heather, how could you leave us, and God, how could you let her die?” Then I thought, “Why didn’t I go over there this morning? How could I not have known that she needed someone?” I wallowed in self-pity for a while after her death, but then I came out fighting. I decided that everyone should know that Heather had a mental illness and that she died by suicide.

They were going to hear her story from me. Many times I cried and couldn’t get the words out, but I tried. The more I tried, the more I could. I am not talented at speaking or writing, but I am telling a story that must be told.

Heather’s life was a procession of extremes from infancy until the day she died. Extremes, such as neatness, hard work, and organization, were her marks of excellence. Other extremes, such as sleep irregularities, difficult relationships, and intense reactions to normal situations, created chaos. Little did I know that all of the above were symptoms of Borderline Personality Disorder (BPD).

At fifteen she attempted suicide by taking an overdose of over the counter drugs. After going to the emergency room, having her stomach pumped, and completing a police report, our family doctor chastised her and told us that she was a “normal teenager, just trying to get attention”. He did not suggest any follow-up, and unfortunately, she disguised her internal turmoil and depression from her family quite well.

School had always been easy for her, but suddenly high school was difficult. She began skipping school, using alcohol and drugs, and engaging in risky behaviors.My husband and I were so concerned that we had her involuntarily committed for psychological assessment in a hospital in Houston. However, she was released within 24 hours with a “normal teenager with overly-concerned parents” diagnosis — again.

Heather’s next few years were plagued with moving often, changing colleges and jobs often, sexual harassment and abuse incidents, abusive relationships with boyfriends, several more suicide attempts, drug and alcohol abuse, traffic tickets, and a DUI, but when Heather was 26 years old, she married and settled into a more stable condition with a commitment to finish college. She completed a degree in chemistry and psychology. She worked as a medical sales representative, was highly successful and became passionate about women’s health care.

Even though she was able to function, her undiagnosed mental illness cycled during these years, taking a toll on her emotionally, mentally, and physically. Because of her husband’s job, she was alone most of the time—working, caring for two children, and managing the home. If that wasn’t enough stress, her marriage and finances were deteriorating. Soon the ramifications of the mental illness and the resulting alcoholism were raging. Unable to perform her responsibilities, she lost the job.

When she told her father and me about her desperate situation, we offered our home to Heather and the children. They moved from Houston to Oklahoma City in December of 2004. After a few months she found a good job as a pharmaceutical sales representative. Heather was then diagnosed with bipolar disorder at the age of thirty-five years — twenty years after her first suicide attempt! I now believe that the diagnosis should have been BPD.

About a year before her death her psychologist told her internist that Heather had BPD. This psychologist did not tell Heather or her family nor did she provide treatment for BPD, demonstrating the lack of education about mental illnesses even among professionals. Today I believe that such myths — that the patient shouldn’t be told that she/he has BPD — must be dispelled (Dr. Brian Palmer at the 2010 NAMI National Convention reported that recovery is very promising when BPD patients are told of the diagnosis).

Heather asked for help, over and over. I can’t imagine how she felt when people looked her in the eyes and refused to help her or looked her in the eyes with the glare of disgust and disbelief. When Heather decided to enter a three-month rehab, she asked the counselor, “Can you teach me how to live?” The counselor replied with a yes but proceeded to do what everyone else had already done.

It seems that the answer for all individuals with mental illness and substance abuse is to work “The Twelve Steps”. In reality, Heather needed something like Dialectical Behavior Therapy (DBT). When she “graduated” from the rehab, she went home with the same emotions and problems and still without the skills to counter them and started drinking again. When she made a drunken call for help to the counselor, the counselor refused to talk with her and told her to call back when she was sober.

She never called that counselor again.

Heather died by suicide on February 4th, 2009. She was 38 years old, and her two daughters, Aubrey and Alyssa, were 9 and 6.

Heather had the possibility of a brilliant life. The only thing lacking was a correct BPD diagnosis and a suitable treatment plan. I still don’t know how to deal with this loss or how to help these wonderful children deal with it. I just try to tell them about their mother. I don’t think she should be put on a pedestal, but I do want them to have good memories and to never forget her.

NAMI has given me unbelievable support. I feel so fortunate to have met Amanda Wang at the NAMI National Convention in Washington DC on June 30th, 2010 and to have heard her remarkable story. I am drawn to Amanda’s story and her desire to help others with BPD. Her remarkable work is priceless and promotes healing for those living with BPD. If anyone can win the fight as well as help others, it is Amanda! Helen Coffey

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I’m in Washington, D.C. for the rest of the week at the National Alliance for Mentally Ill (NAMI) National Convention. So far it has been a wonderful experience speaking at the presentation, “Remarkable Women in Recovery.”

In the picture I’m with author and dear friend Kiera Van Gelder, who has just released a memoir, “Buddha and the Borderline.” BPD life coach Tami Green and author Randi Kreger were also presenters. Truly wonderful to witness these women in the BPD community come to life.

One woman from the audience patiently waited to speak to me. She thanked me for my talk and said, “If only my daughter was able to hear you speak. Perhaps she would still be alive.” She began to cry, and I began to cry too. I just gave her a hug. I felt helpless, wanting so much to console her. She told me of her daughter’s story, how she is survived by two kids and had battled with a misdiagnosis for half her life. I asked her for her daughter’s name.

“Heather,” she said. I searched for something to say.. the only thing I could muster up was, “Thank you for sharing your story with me. I can’t imagine how hard this must be. For what it’s worth, I’ll be thinking of Heather and remember your story as I make my journey.”

I’m going to do my best to make her proud. It is times like these that you realize how much work still needs to be done. I just know we can do it.

Editor’s Note: Kristin Ulland’s authenticity and courage has been a voice I have followed since she first started her blog at borderlinefamilies.com. I am deeply honored to have her as a guest blogger. Her story gets to the core of how very real the suffering this disorder causes and the courage — as well as the fight — it takes to live through it. To Kristen and her daughter, I am deeply humbled. Thank you for sharing the incredible love that exists between a mother and child.

Taking care of my mentally ill daughter is more than just a difficult task, it is a life-long occupation. For years, I ferried her to appointments, to soccer, to school and back and I listened carefully to stories about the cruelty of her classmates or lack of compassion she saw in her fellow team members. Relationships were always a mystery for her. It wounded me to hear how difficult it was for her but I stayed strong, a shield in front of my daughter, a rock for her to lean and depend on. Carefully watching as she walked to the car after school, I assessed the tilt of her head, the pace and bounce of her step, to prepare myself if it had been a good day or a bad day. I was her sounding board. I gave support and reassurance. I cheered and soothed.

My daughter is beautiful, small and athletic. She and her brother have that hard to pin-point origin that comes from the mix of the dark and the fair of a Norwegian and an Argentinean parent. But, even as a teenager, when looks count for far too much, my daughter’s cute freckles and deep mahogany-colored thick hair couldn’t save her; layered over everything was a vulnerability that she could not hide. Kids sensed it and she was always the easy mark. They stole things from her locker, made snide comments about her clothes, laughed at her for reasons she couldn’t understand.  I held her close and commiserated and offered my love, like any parent would.

It was during the teen years that my job as caretaker began to really take shape. The distinction between parent and caretaker was never clear after this. I was my daughter’s best advocate. I spoke to her teachers and defended her increasingly odd behavior. ADHD made her fidget. I made suggestions and assured teachers that she was listening but that she could concentrate better when she was moving around. I asked teachers to give her an outline at the beginning of the lecture so that if she lost herself, spaced out for a couple of minutes, she could find them again and the hour wouldn’t be wasted. Teachers balked at this added assignment for them, but it worked; my daughter did well enough to graduate.

She fell apart in her third year of college. Her coping skills couldn’t battle the anxiety that was taking over her life. Self-medicating turned into a real problem and the underlying mental illness began to wreck havoc on her ability to function.  Suddenly, it seemed, she was a grownup with adult issues that couldn’t be soothed away.

I brought her home and we set about looking for help. We spent years searching for the best facilities in the US and for the most suitable care for her. I visited nine hospitals and residential treatments centers. My daughter stayed in five of them. Diagnoses varied from place to place, adding and subtracting and adding again:  ADHD, bipolar, borderline personality disorder, body dysmorphia, addiction, anxiety, mild autism, depression and PTSD.

Nothing worked. She was thrown out of every place except the last which she fled before they had a chance. Truckloads of meds were administered and hours of every kind of therapy under the sun was tried. The system failed her.

It was not that she didn’t try or even, that every facility made a valiant attempt to save her. It is probably more likely that her combination of illnesses are difficult to tackle. Personality disorder combined with brain disease makes for tricky and often ineffectual treatment.

My daughter is left with only her family to help her. She doesn’t trust doctors, psychiatrists or therapists. None have ever offered her any relief and she feels, in fact, that they ruined many years of her life. Her family has stayed with her every step of the way. Encouraging autonomy and stepping in when the pressure was too great, we painstakingly taught her to balance her checkbook and clean her apartment, to buy food and prepare meals. None of which she can do on a regular basis. Not because she isn’t as smart as a whip, but because the illness has robbed her of basic sequential thought processes. It is frustrating to me that she cannot consistently take care of herself. But, no doubt,  more infuriating for her.

I look at my daughter, into her beautiful brown eyes and see the struggle. That is what motivates me every time to keep being her advocate and caretaker; the anguish of an unfulfilled life is reflected back at me. Hope. Desire. Pleading Neediness. Pain. And, I always see a spark of life and the desire for more, different and better. It is always there, even at her lowest.

She doesn’t want to be mentally ill. She doesn’t want to be a burden. She wants to be like other young adults and make a mark on the world. Have fun, party and then buckle down on Monday morning and do something significant. She can’t because her mind is in the way, causing tantrums and creating fires and confusion.

My husband said that his compassion grew tenfold when it finally dawned on him that she simply doesn’t have the kind of emotional control that we expect from our son. With no emotional engineer at the helm, she flails about for stable ground. It used to be that this wildness irritated him. Now he feels very protective of her when she is symptomatic.

In the most traumatic moments, when my daughter is hopeless and suicidal, I feel her discomfort as if it were my own. The pain pours off her with such force that the pressure seems to chafe my skin with an impact hard enough to deeply bruise. It is at these times, when she wants her body to let go of her soul so badly that she self-injures, drinks, and over-medicates, that I realize there is little I can do, other than bear witness.

I declare time and time again that she is worth every ounce of the struggle she puts into it. When the day’s battle is won and the tension eases, I look across and see a survivor of a kind of war that few people understand. Her life is inconceivably punishing. I applaud her effort to keep going against such terrible odds. She is an amazing warrior.

When I think that I don’t have the strength, I remember the spark of life that lives in her eyes and I renew my fight to release it.

• You can follow Kris Ulland on twitter: @kaulland and at her blog: borderlinefamilies.com.

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You might have seen this post from our RethinkBPD site (currently being redirected to this site), but it is worth republishing here. Diane & Jim Hall are family educators for NAMI and NEA-BPD. Being one of the most loving, generous and hard-working advocates for BPD I’ve ever encountered, Diane & Jim have been a tremendous gift to me. In this post they share a little bit about their journey towards BPD awareness, learning and living with their daughter’s diagnosis. Thank you Diane & Jim!

Since Borderline Personality Disorder was first listed in the Diagnostic and Statistical Manual as a legitimate diagnosis in 1980, the concept of the negative, troubled family environment of the person with the diagnosis has slowly been losing its horrifying stigma. Families were viewed by early medical school educators as causative of the disorder and vilified by professionals. Clients were often advised to separate from their families and concerned families were excluded from treatment of their loved one.

Recent evidence, however, has shown that the supportive, involved family of a person with BPD has a measurable effect on the recovery of the individual.  Imagine that – the family can help! We can be influential in our loved one’s recovery – and care for ourselves as well!

Five Major Things We’ve Learned Since our Daughter’s Diagnosis in 2001

1. The behaviors are reflective of the illness. We recognize that the negative behaviors are an outgrowth of core aspects of the disorder. Borderline Personality Disorder is real. How did we learn this? Through family psycho-education courses and conferences sponsored by NAMI and NEA-BPD.
2. Early, thorough, and correct diagnosis and appropriate, proven treatment are paramount to a path of recovery. How did we discover this? We reviewed resources from NAMI and NEA-BPD; did and still do extensive reading and networking; attend conferences and support groups; consult with helpful professionals; and evaluate all available information. Another “gold-standard” website we admire and use frequently is from Dr. Robert O. Friedel’s.
3. We love our daughter and cherish all the aspects of her life. We always keep faith that she loves us too.  She is an individual with BPD. We address her as a person, not as an illness.
4. We investigated all avenues of health insurance including federal and state funding to insure financial support for the best treatment programs available for her needs. We discussed the top three choices with our daughter. Detailed “fact-finding missions” can lead to educated choices for care.
5. Our lives focus on Education, Skills, and Support. Life with BPD is admittedly different. Still, it can be rewarding. Acceptance and advocacy heal.

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