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Rethinking BPD: A Patient’s View

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Amanda Wang is the lead organizer of RethinkBPD, a peer-led advocacy and support group for Borderline Personality Disorder (BPD). Ms. Wang participated in a lecture series on BPD at the National Institute of Mental Health in Bethesda, Maryland. She shared her personal experience in coping with BPD as well as the objectives of RethinkBPD.

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Transcript

Amanda Wang, Founder, RethinkBPD: Thank you, Pat. Thank you, everyone, for having me here to speak to you today.

I know I am here to share with you my story Living with Borderline Personality Disorder, but first, I want to tell you about a woman named Heather and how someone I have 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 her counselor, “Can you teach me how to live?” Four months later, in the winter of 2009, Heather became another statistic. Like me, and as Pat mentioned, she is one of the 70 percent living with BPD who attempts suicide, and tragically, she is also one of the 10 percent who died by her own hand.

It is staggering; BPD has a suicide rate that is 400 times the national average. Her life is a tragedy not only because she left behind two young children and not only because her diagnosis was withheld, 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 like Heather 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 could not 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 15 years worth of internal contortions, intense pain and battles that raged on in the privacy of my own head were no match for the virtues I tried so desperately to cultivate.

Three years ago, after an intense heart-breaking revelation and 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 kept insanity at bay, my marriage. My marriage began to crumple, and yet, you still loved me. For you were my friend who peered into my eyes, saying you still believe in me. You were my brother, knocking on my door late at night to see if I was OK. You were my mom and my dad, insisting love above all else, no matter who I was and where my mind, where my life would lead me. And finally, you were my husband, with tears streaming down your face, willing to let me go if it meant my happiness. But you — 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 torments of the person you have become, and you ask over and over again, when loves 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 15 years of therapy and medications there in the psychiatry unit of a New York City hospital, I received a diagnosis I’ve never heard before. Out of the 9 symptoms of Borderline Personality Disorder, I had 8 of them, and 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, things that seemed foreign to me, emotions that had actual names. And life, to my surprise, had structure, and I was able to lead myself around that structure. It was only then that I was able to open myself up 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 am only one person, and there are 18 million others out there, just as well. We are living, wishing not to suffer in vain.

There is hope, but the hope is not 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 have 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 the 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 that 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. For even in our darkest hours of despair, in our sorrow and confusion and fear, we, BPD and all, we can never be thrown away.

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.

And I thank you for today. Thank you to NIH and to the NEA-BPD for allowing me to speak to you, and I thank you for teaching me how to live.