According to The National Alliance on Mental Illness (NAMI), Borderline Personality Disorder (BPD) remains one of the field’s most stigmatized mental illnesses. Although we are actively fighting against stigma associated with all mental health diagnoses, I can tell you firsthand that this is very true; I’ve lived with this stigma every day since I was a teenager diagnosed with BPD.
As a person who’s experienced a great deal of trauma, I have been to countless mental health professionals. Each time I sat across from a new therapist or clinician, I felt the same way while they sat in their chair, judging me as they scribbled notes on my chart. Each time, my chart was filled with notes of how “combative” or how “dramatic” I was, always making sure to add that I have an eating disorder and that I self-injure. Notes with the undertone of “What is wrong with you?,” leaving little room for the question “What happened to you?” Never listing my strengths—survivor. Courageous. Kind. Sensitive. Loving. Leaving me to believe I was somehow broken. I began to attach myself to that feeling of brokenness and left each session filled with shame and the belief that there was no hope for someone like me.
This went on for years and years. Session after session of multiple diagnoses; but this one, my diagnosis of BPD, was the worst. As time went on, I began to realize the weight that that diagnosis carried. I began to feel the stigma when I told people about my diagnosis. The assumptions they made about me, their doubts that I would ever be able to recover and heal left me feeling more hopeless than when I walked through the door to get help.
Finally, I did find a therapist who believed in me and restored my hope in myself; she taught me that I was not my diagnosis. She is a therapist that specializes in Dialectical Behavior Therapy (DBT), an evidence-based approach that began with the effort to treat BPD. With her belief in me and DBT on my side, I began to find stability. I am now and forever will be grateful to her and her belief in me. It made all the difference in the world.
I began working in the mental health field in 2007 and dreamed of the day I could move up the ladder—one day, I told myself, I would sit in treatment team meetings and have my own office. And guess what? I did it. I was promoted, got my own office, and was invited to the ever-exclusive treatment team meetings. I was so excited to be a part of the conversations and see what happened behind the scenes with all the providers; I remember sitting there with my notebook and cup of coffee, covered in tattoos, wearing Dr. Martens with a dress and trying to blend in.
During the meeting, I heard a therapist refer to someone as “a borderline.” People smirked in agreement with that stigmatizing statement, which was followed up by a comment that “they are manipulative” and “the worst to work with” and “almost impossible.” I could feel my stomach tighten and my palms get sweaty. I always felt the stigma, but witnessing professionals speak so negatively firsthand was what shocked me the most. My face got hot as the words started to come out of my mouth.
“That is awful. Can we stop calling people ‘borderlines’? It is offensive!”
A therapist who knew I am in recovery looked at me and quietly asked “Oh, were you diagnosed with Borderline?”
I was open about being in recovery, but had not disclosed my BPD diagnosis. But I couldn’t stop myself, and my next words were “Have you heard my recovery story? Eating disorder, trauma, self-injury, substance use. You’re a therapist. You know the DSM right? What do you think?”
He responded with “Oh. You seem so well-adjusted.”
I said “Well. We do recover, when people believe in us.”
I wanted to say more. I wanted to scream, cry, and run out of the room. But I regained composure by using mindfulness skills. I left the meeting, and I don’t really know how to describe the feeling that came with me. What I did know is that since it “came out” that I have BPD, every move I made from now on would be scrutinized through a different lens.
This is how it is for those of us with BPD. But those perceived traits are not who we are. That’s why we have to change not just our language, but our beliefs around Borderline Personality Disorder. It’s not just language that matters, it is also judgmental opinions and preconceptions. Especially for those in the mental health field; your opinions shine through in your work. Your judgments seep over into your sessions with me, and people like me, even if you think they do not.
I am a Peer Recovery Specialist. Part of my job is to share my story to inspire others. I would be a liar if I said that I don’t have hesitation when it comes to telling people I am diagnosed with Borderline Personality Disorder. I still live with the fear that people I work with will find out, then see my opinions differently than they did before they knew. That my contributions will no longer be seen as constructive, but “combative,” or as me being “non-compliant”—the same words that have followed me through my clinical experiences that are littered throughout my charts. Will they see me differently? Will they begin to judge my every move and just think the same old things—like “manipulative,” “dramatic,” “crazy,” and “difficult”?
As I write this, I am pushing through anxiety and trying to be brave. I am sharing my story because it pains me to hear others just like me describe their experiences, and to hear the hesitance in their voices when they talk about it. Their voices shake as they anticipate judgment. I want you to know that if you or a loved one lives with BPD, you are not alone; that’s the purpose of my sharing this. I want to let people know that we, too, can get better.
I choose to be brave to empower you to be brave. I want you to know that we have the right to advocate for ourselves. We have the right to advocate for better treatment, for fair treatment—from helping professionals address their own biases to educating others who might think of us as anything other than people trying their best: people with the capacity to grow through a diagnosis.
Because that is who we truly are.
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Content warning: self-injury.
Stigma
It is hard to not give up
Voice shaking, heart racing, head spinning
I don’t want to show you my self.
I don’t know if I should share this part of me with you
But I need you to know.
I need you to see me, hear me, understand me
The outbursts just mere reactions
The old familiar feeling of not being heard, not being seen
Disposable
The fears within me screaming, clawing to get out
Stigma tells me there is no hope for me.
Difficult, crazy, manipulative, uncooperative, resistant
Stereotypes etched into my brain
Words scribbled in my chart by another white coat
As I carve sadness and despair into my upper thigh
These emotions sting and singe
Feels like walking around with third degree burns on my skin
Coping skills are a trial by fire.
I know it can feel like walking on coals sometimes
But I need you to know how painful it is
To feel this way, to burn this way
If you see the smoke please don’t turn and walk away
Leave me to burn to the ground.
I am tired
But I believe I am more than this
More than just some diagnosis.
*Originally published by WEconnect Health Management, written by Jenn J.