Borderline personality disorder is highly stigmatized and lonely

BPD isn’t considered curable. So, sometimes insurance won’t cover treatment.

By: - March 7, 2023 5:40 am

(Getty Images)

This story discusses suicide and self harm. If you or someone you know is contemplating suicide, please call or text the National Suicide Prevention Lifeline at 988. 

When Mo Lewis was 11 years old, his dad died. 

In the following years, he developed traits of borderline personality disorder. He became suicidal, harmed himself and repeatedly spent time in hospitals — both locally and out of state — for psychiatric care. 

He attributes much of this to the trauma of losing his father at such a formative time in his childhood. 

Mo Lewis, who lives with borderline personality disorder, practices his rola bola act. (Photo provided)

“I also had lots of problems with emptiness and fear of separation and abandonment,” the Louisville preschool teacher and circus performer, now 29, told the Kentucky Lantern. “I still to this day have to call my mom twice a day just to hear her voice to know ‘okay, she’s still there.’” 

Two years ago, he got an official borderline personality disorder (BPD) diagnosis. He started therapy and mindfulness – the practice of being present – to cope with his traits, but the pandemic caused his condition to flare and intensify. 

Lewis — and Kentucky therapists who treat BPD — say it’s often misunderstood and stigmatized. 

And treatment is often limited thanks to coverage gaps. 

What is BPD? 

The National Alliance on Mental Illness estimates that 1.4% of the United States population has a BPD diagnosis, with 75% of those being women. Men may be equally impacted, but get misdiagnosed.

People who have this disorder experience “​difficulties regulating emotion,” NAMI says. 

“In essence, borderline is really a mental health disorder that really makes up the way a person thinks, how they feel about themselves or other people around them,” explained Lauren Downey, the founder of Lexington’s Trauma-Informed Counseling Center

Shannon Sauer-Zavala, an associate professor in the University of Kentucky’s Department of Psychology, said there are more than 200 different symptom combinations in BPD. That means two people can have BPD and it may look very different in each. 

“If you meet one person with BPD, you’ve met one person with BPD, right?” she said. “The presentations are so, so varied.” 

Jana Wilson, founder of Paducah’s J.F. Wilson Wellness Center, said a person with BPD usually “has long-term patterns of instability or turbulent emotions.”  

“A lot of times,” she said, “their experiences or their symptoms will lead to impulsive actions.”  

They may demonstrate, for example, compulsive tendencies, “chaotic relationships” and a lot of issues within those relationships. 

The COVID-19 effect 

Lewis struggled during the early years of the pandemic. Work shut down. He was lonely, bored. 

Life, he said, felt like a “ticking time bomb.” 

His fear of abandonment spread to employment as well when he could no longer perform his circus act. Over the course of a year, he was in the hospital eight different times. 

“I didn’t know how to deal with the pandemic,” he said. “It was scary. It was basically … fear of the unknown.” 

Jana Wilson
Jana Wilson, founder of Paducah’s J.F. Wilson Wellness Center, treats BPD in West Kentucky.

Wilson said this is not an uncommon phenomenon. 

COVID definitely has played a significant role with individuals suffering from any mental health diagnosis,” she told the Lantern. 

Most recently, she said, COVID-19 compounded with winter and resulted in increased depression, self-harming, loneliness and mood swings. 

BPD myths and stigmas

Because BPD can vary so much person to person, it’s often misdiagnosed as PTSD, depression or other trauma-related conditions, Wilson said. 

BPD is sometimes stigmatized even more than other mental illnesses, Sauer-Zavala said. That’s because “there’s a lot of myths about it that aren’t even accurate.”

For example, BPD is often associated with a person being difficult and angry, but that’s a generalization.

“Many, many people that have BPD,” Sauer-Zavala said, “don’t endure some of those symptoms.” 

How to know if you might have Borderline Personality Disorder

Therapists say symptoms of BPD are broad and vary person to person. But, here are some symptoms to be aware of.

If you experience these — and if they interfere with your daily life — it’s time to talk with a therapist.

  • Suicidal ideation, both passive and active.
  • Intense fear of abandonment.
  • Fear of being alone.
  • Feelings of emptiness or boredom.
  • Feeling lost.
  • Black and white thinking.
  • Inappropriate anger.
  • Impulsiveness.
  • Self-harm behaviors.

Most people she deals with who have BPD, she said, are anxious about the status of their relationships. Because of this, “interpersonal anxiety disorder” is a more appropriate name, she said. 

“When I’ve served somebody who presents with such traits, they’re coming to me in that, in some area, their quality of life has failed,” Downey said. “So whether it be in the work setting, in a romantic situation, or even in like … a friend group.” 

Lewis said what people need most who have BPD is support and love. 

“With the fear of abandonment, with the feelings of emptiness, with the … insecure self image, if we have the support, that’s what helps us … get through it,” he explained.

It helps them know: “‘Okay, there’s someone that’s on my side, there’s someone that I can talk to,’” he said, “whereas … if people push us away, that just makes it harder on us because it adds to (the idea that) ‘there’s something wrong with me.’” 

With the fear of abandonment, with the feelings of emptiness, with the insecure self image, if we have the support, that's what helps us get through it.

– Mo Lewis, who lives with BPD

What does treatment look like? 

The best treatment for BPD right now is a year-long dialectical behavior therapy (DBT), in which a patient learns ways of coping with BPD traits. Patients in DBT work one-on-one with a therapist and also in a group of peers during this time.  

Patients, said Sauer-Zavala, “learn skills to regulate their emotions, they learn skills to be more effective interpersonally, they learn skills to … approach themselves in the world more mindfully.” 

During the year, patients meet at least two times every week, she said, adding: “It’s pretty comprehensive and pretty intense.” 

Dr. Shannon Sauer-Zavala is an associate professor in the Department of Psychology and the University of Kentucky.
Dr. Shannon Sauer-Zavala is an associate professor in the Department of Psychology and the University of Kentucky.

Sauer-Zavala is currently researching a shorter treatment option at UK. She’s looking at an 18-week program without the group component, which looks promising, she said. 

Cognitive behavioral therapy, Wilson said, can also be beneficial. 

“Usually,” she said, “any trauma-focused therapy can be a good form of treatment as well.” 

Where does BPD come from?

The current thinking, said Sauer-Zavala, is “it is a transaction between biological vulnerabilities and early learning experiences. So nature versus nurture? No, it’s both.” 

“Folks that are more at risk to develop not just BPD but really any mental health condition, tend to experience emotions really strongly,” she said. “And that’s … a biological disposition.” 

They also tend to be more willing to take risks and more impulsive. 

Folks can be further sensitized, she said, if they were emotionally invalidated during their childhood. That could range from sexual and physical abuse to disregard. 

For example, “You can imagine a child being like, ‘oh, like, I broke my bike, and I’m really sad’ or ‘I lost this prized possession’ and a parent being like,’ that’s a stupid thing to be upset about.’”

(BPD) is a transaction between biological vulnerabilities and early learning experiences. So nature versus nurture? No, it's both.

– Shannon Sauer-Zavala

Gaps in care 

The last few years, using telehealth has been vital to Wilson’s ability to treat people with borderline personality disorder, she said, and she hopes her ability to continue using it won’t go away. 

“During COVID … a lot of people didn’t have the ability to get out to go to a physical building. So definitely, telehealth has been a great benefit as far as helping individuals who suffer from borderline personality disorder — as well as other disorders — because when they’re feeling isolated, they just still have therapy,” she explained. “They can still be in treatment … without having to leave the comforts of their home or their safety net.” 

This issue is before the Kentucky Legislature this session. House Bill 311, a bipartisan effort, would allow Medicaid health providers to offer care via telehealth without being required to have a physical address. It passed a Health Committee on March 2 and the House on March 8 – both unanimously.

But, treating BPD has other hurdles. 

Because BPD isn’t considered “curable,” insurance coverage of treatment is inconsistent. 

Dr. Lauren E. Downey is the founder and clinical operations director of Lexington's Trauma-Informed Counseling Center
Dr. Lauren E. Downey is the founder and clinical operations director of Lexington’s Trauma-Informed Counseling Center. She treats BPD.
(Photo provided)

Downey often struggles to get insurance companies to cover DBT. Some companies, she said, don’t want to cover a year of treatment for a condition that won’t go away. 

“If I’m really trying to help my community, and that’s why I have my practice … I’m not going to be able to tap into the people who need the help the most,” if insurance won’t foot the bill, she said. 

At that point, she said: “I’m only going to be tapping into those who made it so far in life or do have this extra money … and they can afford a certain level of care that … most people, myself included, really just cannot afford.” 

That’s not a universal problem, though. Wilson, for example, has had no such issues in West Kentucky. 

“Therapy will never leave me” 

Lewis is in talk therapy for now. DBT, for him, would be out of pocket at about $100 a session. 

If he went once a week for a year, that would be more than $5,000 out of pocket. 

That’s just not accessible long term. 

“It’s definitely not a quick fix,” Lewis said. “It’s not like a couple of sessions and done.” 

Mo Lewis, who lives with BPD, practicing the rola bola.

Borderline personality disorder will always be in his life, so he needs consistent therapy. And it helps him. He learned in therapy how to ground himself by going through his senses to calm down, how to take deep breaths. 

He uses reading, too, to calm anxiety and is working his way through the science fiction series “Keeper of the Lost Cities.”

“Therapy will never leave me. … I will always be in therapy because of the borderline that I have,” he acknowledged. “It may not be as intense … as I get older, or as frequently, but it is something that is a need that will be there the rest of my life.” 

For now, he’s training full time to make up for the hours he lost getting treated the last few years.

He’d like to start performing his circus rola bola act again in 2023. 

This story discusses suicide and self harm. If you or someone you know is contemplating suicide, please call or text the National Suicide Prevention Lifeline at 988.

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Sarah Ladd
Sarah Ladd

Sarah Ladd is a Louisville-based journalist from West Kentucky who's covered everything from crime to higher education. She spent nearly two years on the metro breaking news desk at The Courier Journal. In 2020, she started reporting on the COVID-19 pandemic and has covered health ever since. As the Kentucky Lantern's health reporter, she focuses on mental health, LGBTQ+ issues, children's welfare, COVID-19 and more.

Kentucky Lantern is part of States Newsroom, the nation’s largest state-focused nonprofit news organization.

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