Kellyann Navarre

@kellyannnnavarre | contributor
Super Contributor
I am a psychology MA student, research coordinator, BPD support group facilitator, and part of a specialized SCN Program here at The Mighty where I write select paid pitches. I focus broadly on emotion regulation, BPD, accessible care, and health related issues (e.g., disease, disability, and chronic illness). I facilitate various live events/webinars for The Mighty and have gotten involved in ways I couldn’t imagine. I believe these stories will shape the outlook and discussions on a broader level and contribute to social change. Diagnosed with and write about: borderline personality disorder, major depressive disorder, and persistent depressive disorder/dysthymia, Amelogenesis Imperfecta, auditory processing disorder, POTS, some hearing loss, and platelet storage pool disease. Views are my own.

Why Rare Dental Diseases Can Be Disabilities

The world tried to take away my smile. As a child, I learned very quickly that I was not to smile or talk. My teeth were streaked with yellow and brown. They were pitted, grooved, and unusually small, with gaps bigger than my actual teeth. Every smile, sigh, whisper, and word I spoke revealed the formation of my teeth. I saw that I was ugly, unwelcome, rotten, and disgusting. My existence was raw, exposed, and vulnerable for all the world to see. I was born this way. I have a rare genetic disorder known as amelogenesis imperfecta (AI). It affects only 1 in 14,000 to 16,000 people in the United States, which is about 0.007% of the population. AI is a disorder of tooth development that involves the formation of enamel and results in teeth that are discolored (yellow, brown, grey), pitted, grooved, brittle, and unusually small. My teeth are naturally uncovered, with the nerves and dentin exposed. It may be clinically clustered with other rare syndromes, including nephrocalcinosis (a kidney disorder), skeletal disabilities, cone-rod dystrophy (vision loss), epilepsy, dementia, intellectual or developmental disabilities, and fragile nails or bones. I know what it is like to bleed by the mouth from just trying to eat, to cringe in pain from the air hitting my nerves, and to go hours and days numb, unable to talk. As a child, I was selective with food because temperatures or textures were often painful. Food felt like I was either digging my teeth into ice cream or trying to rub sandpaper on my teeth. Without the natural protective covering, the air temperature from breathing sometimes brought sharp pain. Food tasted like pain and humiliation. I was desperate to brush off the ugly. While kids my age were playing games outside or watching a movie, I would frantically brush my teeth. Hours would pass as I brushed every tooth, one by one, each day. I think my record was four hours straight. My teeth throbbed, but I did not stop. Why didn’t my teeth look like other kids my age? I wanted to brush away the ugly, but most of all, I wanted to try to save my teeth. I did not smile, because I thought no one should see what I really look like. I thought no one should see my face until I single-handedly fixed it. A child does not know any better. I have not encountered or learned of another person with AI, and there remains a lack of research on the disorder across all disciplines. Sometimes when I see other peoples’ teeth, I feel a sense of disconnection. Given that I have never experienced teeth with enamel and protective covering, I do not understand what it is like. I suspect that most people have never stopped to ponder the way straight, white teeth are a social prerogative or used to infer a character judgment, such as friendliness and cleanliness. Luckily, I was homeschooled, so I happened to escape most if not all pejorative remarks and messages. My siblings and friends did not care, but I still grasped that I was different, and not the “good kind” of different. Dental appearance tends to be attributed to good hygiene, moral behavior, or lack thereof despite the combination of factors that more heavily influence the appearance of teeth, including social class (e.g., inability to afford dental care), disability, medical conditions, or medication side-effects. “Ugly” teeth are often the brunt of a joke or cruel internet meme. “Meth head” and “drug addict” are thrown around at people who have “ugly teeth.” Yet, the only difference between me and these people is access to dental care. Indeed, disability is often used as a moralistic crutch, plot device, and punishment in popular culture. “Ugly teeth” are the “life lesson” of the day. “That is what happens when you don’t brush your teeth and eat sugar all day!” I assimilated that it was my fault. It was my fault. It was my fault. The medical ableism and the barriers are other pertinent parts of the rare disease experience. Dental care is considered separate from medical insurance, a problem that results in even further barriers to care. Even more, dentists may not have familiarity with such a rare genetic disorder. I remember when my mother confronted a dentist who told me to “brush better.” Excuses usually consisted of “I must not have read the condition on the chart.” All I heard was four hours was not enough. The insurance company initially refused to cover any treatments for my teeth. They had never heard of such a condition. The majority of people with AI lose teeth or need multiple root canals as children, which I assume my access to dental care and four-hour-long teeth brushing helped me avoid entirely. Without the teeth coverings, however, losing my teeth as I grew up would be inevitable. My dentist diligently contacted the insurance company with a thorough letter that described the realities of this condition and the importance of covering my teeth while I am young, as soon as possible. First, insurance only agreed to cover temporary bonding, which was enough to protect them initially. When I was in my mid-teens, insurance finally began to “cover” some permanent, porcelain crowns — except that each individual tooth cost over $800, and insurance coverage handled less than half the cost. My top front 10 teeth are now covered with porcelain crowns. The rest of my teeth remain covered in bonding that can last many years. For a while, I received a compliment on my porcelain white crowns almost every week. Suddenly, everyone wanted to know what kind of toothpaste I use. Suddenly, people accepted my teeth, but I was the same person with the same teeth underneath. I knew the world considered me naturally ugly. I internalized the ableism instead of challenging the standards of being and acknowledging my disabilities. As a child, I did not understand what I was struggling with was a disability, nor did most people around me. The world presumptuously blames it on “ugly” or improper hygiene. With years of self-awareness and learning, I realized the importance of claiming these characteristics as part of me and my form of being, rather than viewing it through the lens of stigma, failure, or “ugliness.” Since then, I have learned to view my porcelain crowns the same way the disability community views a mobility aid and other accessibility/adaptive devices. The porcelain white crowns are not separate from me. They do not cover and hide me — they are an important part of me and my story. They are part of my human difference, my experience, and part of my being for better or worse. They are part of accessibility for me to eat, breathe, and live. I remember my countless hours at the dentist, and the university visits to participate in a case study on AI. I remember the pain. Disability is not always pain-free, even when we take the social barriers out as a factor. But I also remember the care. My mom tried to make the best out of my memories and always assured me it would be OK. I remember the lunch breaks with my mom during the case study and visits to the park. I remember the kindhearted dentists who gave me my smile back. I remember the scholarship committee that selected me to win a rare disease scholarship two years in a row. Most of all, I remember eagerly taking the mirror from my dentist the first time my porcelain white crowns were part of me. I looked in that mirror, smiled, then sobbed in the dentist’s chair. A little girl with amelogenesis imperfecta flashed back at me in the mirror for a second. I thought, “This is part of who I am. I am strong. I now have a strong porcelain shell.”

Social Security Disability Fraud Is Rare, Unlike These Common Scams

“Disabled people have it so easy. They live off our tax dollars, buying Xboxes while the rest of us have to work and pay for their lifestyle. Most of them are faking and don’t deserve it.” — too many people on Facebook If I could only bust one widespread myth about life with a disability, it would be this one. For some reason, the general public believes that receiving Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI) (and similar benefits in other countries) is a ticket to the high life. They imagine hordes of scammers rolling in dough every month — people who are completely healthy, or just have mild health conditions and could work but don’t want to. But this could not be further from the truth. In reality, less than one percent of SSDI claims are estimated to be fraudulent, a vanishingly small number. Qualifying for federal and/or state disability programs in the United States is a grueling process that takes years, unless you have a terminal illness or one of a very few conditions that qualify for “presumptive eligibility.” Most applicants are initially rejected, which means they must appeal, submit volumes of medical documentation, see multiple doctors, and sometimes even appear before a judge in the hope of being approved. And all this for what? According to the Center on Budget and Policy Priorities, fewer than four out of 10 SSDI applications are ultimately approved, and 90% of beneficiaries receive less than $2,000 per month. The average SSDI payment as of 2022 is $1,358 per month. People who have never worked or don’t have enough work credits get SSI instead — a whopping $841 per month. Could you live, let alone live well, on $841 per month, or even $1,358 per month? No one is getting rich because they receive disability benefits. Of course, some people occasionally fake a disability for personal gain. They might do something like use Grandma’s parking placard at the grocery store or rent a wheelchair to skip the lines at Disney World. But those are low-stakes, low-risk, and low-effort endeavors, not a years-long dedication to fooling doctors and employees of a massive government agency. Such instances do occur — the Dee Dee and Gypsy Rose Blanchard case, for example — but they are incredibly rare. What is far more common is people desperately needing disability funding and services and having to fight for years just to get a meager monthly payment and spend their lives in poverty. The persistent myth of scammers in disability programs must be addressed because it hurts disabled people who struggle to get the support they need. Most people respond by citing facts and statistics like I just did to show how hard it is to get benefits and how lousy they actually are if you do get them. But I think it’s time to try a new tactic. By talking about the scams we encounter every day, we can demonstrate why faking a disability to get Social Security simply isn’t worthwhile to the vast majority of criminals. Here are five common scams that are easier and far more lucrative than pretending to have a disability. 1. The Nigerian Prince scam. We’ve all gotten one if not dozens of these emails. There are five in my spam folder right now. A Nigerian prince, a banker from Ghana, or a director of a charity for orphans has millions of dollars they can’t access — but you can help. These are known as “advance fee” scams, because the scammer convinces you to pay a fee with the promise of a much higher return, then takes your money and disappears. Have you ever wondered why these emails are so poorly written? You would think that con artists would try harder to make their story seem believable, or at least run spell check. Who would fall for such an obvious scam? Some research shows that fraudsters make their messages seem shady on purpose. They don’t want to waste their time on people who might fall for the initial email but spot the scam before sending the money. They want the most gullible marks they can find, so creating a scam that’s obviously a scam to almost everyone leaves them only with those to whom it’s not obvious. And sadly, that group is mostly elderly folks and people with intellectual disabilities. Take note of that, because you’ll see it again. 2. Pretending to play an instrument. A couple of weeks ago, I was taking my dog to the veterinarian when I saw a young man playing the violin for tips in the parking lot. Even though the university in my town has one of the top music programs in the country, and we have street performers here, something felt off about it. Later that day, I found out via social media that it was a scam. These individuals are not actually playing an instrument; they are pretending to play to recorded music. They are not homeless or down on their luck, either. Most are part of organized traveling groups that engage in scams for profit, often using their kids to drum up sympathy. What’s genius about this scam is that aside from minor trespassing or panhandling violations, it’s not illegal. If someone wants to toss a few dollars to someone they believe is a struggling but extremely talented musician, that’s their choice. Unlike scamming Social Security, which is punishable by massive fines and prison time if you even manage to pull it off, pretending to play an instrument is easy, brings in tax-free cash, and at worst you’ll get a ticket or spend a night in jail. Every time I’ve told someone about this scam since I witnessed it, they readily believe that the violin playing is fake, but struggle to accept that the “player” isn’t genuinely in need of help. I wish more people would extend the same benefit of the doubt to folks who need disability benefits. 3. Running a rigged carnival game. If you’ve ever tried to impress a date at the county fair by winning a stuffed animal for them, you’ve discovered that carnival games are a lot harder to win than they look. From visual tricks to exploiting basic principles of physics, these games are carefully designed to guarantee that the operator will always earn a profit. In the video below, engineer Mark Rober explains how carnival scams work and tests some at a local boardwalk. Rober and his colleagues collected data showing that the carnival they were studying grosses about $20,000 per day from games. That means they bring in almost $4,000 more in one day than an average SSDI recipient makes in a full year, and twice what SSI recipients make in a year. And once again, this scam is legal. In fact, most of us have been conned at a fair or amusement park and had fun in the process, even knowing the odds are stacked against us. Back in the day, one of the only ways to support yourself if you had a disability was to join the circus. Apparently, it’s still a better-paying option than government benefits — and both easier and more profitable than faking a disability. 4. “Catfish” romance scams. Catfishing is a slang term for pretending to be someone you’re not online, particularly on dating websites. Some people just catfish as a prank, but far too many do it to steal from lonely, vulnerable people who are looking for love. This twisted scam often ensnares seniors and people with disabilities who have retirement funds or legal settlements the scammer can loot. But even those who don’t have much money may be victimized, as professional catfishers can have several marks “on the hook” at the same time. Some online romance scammers also live in countries where $50 or $100 is more than most people earn in a month. One of my personal care assistants previously worked for a disabled woman who had fallen for one of these scams. She had met her “boyfriend,” who claimed to be a military doctor, online, and would send him money. No matter how many times the woman’s grown children tried to explain that he wasn’t who he said he was, she refused to believe it. The emotional manipulation inherent in romance scams makes them especially cruel and damaging to victims when they finally recognize and accept the truth. You can learn more about romance scams and how to protect yourself on the FTC website. 5. Scamming or exploiting a disabled person to steal their Social Security benefits. Scamming to get Social Security benefits is rare, but defrauding people who receive Social Security is disturbingly common. The Social Security website even has a page about how to protect yourself from scams. If you or a loved one receives disability or retirement payments, please read it. People who manage to get on SSDI or SSI often live in fear of losing their benefits because of a paperwork error, because they earned or received too much money from another source, or because someone falsely accused them of fraud. Scammers know this and use it to their advantage. Identity thieves will call and accuse recipients of fraud or even threaten them with arrest, frightening them so they are not thinking clearly. Then they’ll offer to look into the issue and ask to “confirm” the person’s Social Security number and other personal information. Unfortunately, such scams are far from the worst-case scenario when it comes to stealing disability benefits. In 2011, four adults with mental disabilities were found chained in a Philadelphia basement, imprisoned by their supposed caregivers who were living off their SSI payments. And then there was boarding house owner Dorothea Puente, who appeared to be a harmless grandmother but was actually a calculating serial killer. She took in men with mental illnesses and disabilities, murdered them, buried their bodies on her property, and kept collecting their Social Security checks. You can also learn more about her in the recent Netflix series “Worst Roommate Ever.” As these scams demonstrate, con artists are after one thing: an easy mark. The Social Security Administration is about as far from an easy mark as it gets. But sadly, people with disabilities are frequently victims of fraud — and the scams I listed above are just the tip of the iceberg when it comes to criminals targeting our community. So let’s stop accusing people who depend on SSI and SSDI of faking and start going after the real scammers.

Amber Heard Trial: Borderline Personality Disorder Stigma Is Dangerous

I traveled to Chicago, where I presented research at a psychological association conference as part of my work in my clinical psychology master’s degree program. I was happy, finally taking time for myself, and hanging out and laughing with my research lab members — until I noticed my phone notification late one night. I received an anonymous message that read: I saw your article complaining about people describing BPD’s as abusive. BPDs get described that way because they are. That’s like saying we shouldn’t stigmatize drunk drivers who kill people. That’s projection because of your own guilt. #iftheshoefits My lab defended me and joked about trying to find out who sent that unfounded message. Luckily, I was surrounded by support and reminders that the message is not an accurate depiction of who I am. This stigma is nothing new. It was one of two comments and messages I received within 48 hours, and one of at least 100 harassing messages I have received over many years, directed at me, my borderline personality disorder ( BPD ), and the symptoms that I am candid about in my advocacy work. I do not even know who these people are. This time, the stigma was further provoked by the Amber Heard case, domestic violence, and the recent speculation that she has BPD . Since then, BPD has been a central topic, weaponized in countless news articles, videos, and social media posts. This article is not to defend Amber Heard or comment on the case itself in any way, but it is more about addressing BPD stigma. It should not be controversial to state that overgeneralized, villainizing statements about a psychological disorder are wrong, serious, and unsupported claims. The statements should be critically considered and understood for what they are— public stigma against a group of people who have absolutely nothing to do with Amber Heard and the case. Public stigma can be described as negative and discriminatory attitudes, beliefs, and behaviors that people have toward a psychological disorder (e.g., rejection, fear, avoidance). Now, BPD has been thrown around as a term to refer to abusive and violent behavior, whether someone has BPD or not. People on social media have taken it upon themselves to “diagnose” anyone who displays abusive or otherwise harmful behavior as having BPD. They conflate BPD with abuse and use it to legitimatize their experiences. While BPD stigma is not new, it is notably more frequent and public. For example, one video about Amber Heard generalizes that BPD is the reason she is is “ not even fit to be a mom ” while an article describes BPD as the type of people who have a harmful and counterproductive relationship with society. Comments and social media posts cover the screen and claim that we should be “locked up,” we are “crazy,” that people do not understand “how dangerous people with these disorders are” and that BPD is all the more reason not to believe anything she says. Terms such as “callous,” “violent/dangerous” and “manipulative” are being incorrectly used to refer to BPD and our symptoms, such that people who display these behaviors are weaponized as having BPD even if they do not. Initially, I felt empty and scared after I read that message. That quickly shifted to anger and fear for what this means moving forward. I knew those of us with BPD would be targeted. I knew this would ignite more misinformation from both stigmatizing sources and even well-meaning people who intend to educate. I knew what this would lead to. Clearly, we are seeing collective public attitudes that reject, insult, villainize, and discredit people with BPD overall. Many of us with BPD cannot go one day without seeing the stigma on social media and other outlets. We will be and are getting harassed. Simply, the messages are loud and clear to those of us with BPD: I am worthless. I am a monster. Unfortunately, people with and without BPD who address the stigma are getting accused of “taking a side” and “defending” abuse, when that is not what we are doing at all. We are concerned about the consequences of collective discrimination against people with BPD. The message I received is a good example that demonstrates what people with BPD are encountering right now and long before the case even existed. BPD has long been considered a highly stigmatized psychological disorder in clinical settings. Both our diagnosis and symptoms have been stigmatized for so long, rather than understood through competent care and research. Stigma has pervaded popular culture where BPD is weaponized, and stigma is reinforced. For example, rather than understand that BPD self-injury may be more related to self-punishment, a distraction, or an attempt to intrapersonally and interpersonally regulate emotions, it may be pejoratively referred to as manipulative. This overlooks research in basic psychological science that demonstrates the reasons and functional considerations of self-injury. Simply, the messages are loud and clear to those of us with BPD: I am worthless. I am a monster. My symptoms, rather than being understood, are turned into insults. It contributes to  internalized stigma , feelings of avoidance, and fear of reaching out for help or support. I do not understand how others do not have compassion for people struggling with a psychological disorder that entails intense psychological pain. I struggle with reactive dysphoria, chronic emptiness, paranoid ideation , self-injury, suicidal ideation, and extreme reactions to and preoccupations with abandonment (and rejection). Mundane events, such as brief separations, perceived slights, or misunderstandings may trigger extreme emotions such as hurt, humiliation, and feeling hated and excluded, and efforts to try to avoid abandonment. What I do not struggle with is being abusive, manipulative, and a danger to others. No one in my life would describe me that way. BPD stigma and ableism maintain real consequences for real people and may trigger more symptoms. This is especially concerning, considering people with BPD have high rates of trauma and suicide. Around 70% experienced trauma as a contributing factor to BPD, and around 10% or more of people with BPD die by suicide, while 70 to 80% attempt suicide . As this case unfolds and the degrading continues, there are a few important points to keep in mind. 1. A psychological disorder such as BPD is not synonymous with abuse and cannot be used to justify or explain it. BPD does not make someone abusive. That is a very strong statement. If someone is abusive, it is not simply “because of” BPD but rather because of abusive tendencies. It’s ableist to assign your abuser a personality disorder or blame their health issues (mental or physical) to legitimize your account of the abuse. https://t.co/a04nujBhCf— ????Bibi????♿ (@bibicosplays) April 29, 2022 2. Whether Amber Heard has BPD or not does not make it OK to excuse or blanket abusive behaviors under BPD. 3. Someone cannot claim to be fully against abuse and harassment yet harass people with BPD, and verbally attack us and the condition we live with. 4. Many of us with BPD do struggle with symptoms such as extreme anger. This is not synonymous with abuse, either. 5. It is dangerous to discredit people and what they say by simply referencing their BPD, especially considering people with BPD are also at risk for being victims of abuse and violence themselves. This could have negative implications for people with BPD overall, including gaslighting. 6. It is crucial to educate using credible and accurate resources. Organizations such as Emotions Matter and the National Education Alliance for BPD are two options. Emotions Matter has a BPD Fact Sheet. These organizations also have resource recommendations.

Community Voices

How Disorganization and Clutter Can Be a Side Effect of Depression

As I currently type, there is a pile of clothes to my left, another to my right, a McDonald’s cup, two old coffee mugs on the window sill, and a third (yes, a third) pile of laundry in my line of sight in the bathroom. This doesn’t count all the miscellaneous stuff (markers, books, sketches, crystals, you name it) on the left side of my bed, and all the hair products that sit on my bathroom counter. I need to vacuum, badly. I have trash in bags I’ve been meaning to take out since Christmas (at least there’s no food in there), and flowers that dried out months ago. How did it get this bad? The answer is simple. I’ve been sad as shit lately. More specifically, I’ve been depressed. Additionally, my executive dysfunction makes it really hard to stay on top of chores. I do my best, and I actually prefer to have a clean home, but my mental health and attention-deficit/hyperactivity disorder (ADHD) make it really hard to get it all tidy (and keep it that way). I was raised in a house where, at times, it did feel like your worth as a person was directly tied to how good you were able to tend to house and home . At a young age I was told I wouldn’t find a partner one day if I was so messy and that I would have a family to take care of one day, aka, do better. One time I was shamed in a passive comment where someone said, “You like living in a mess. I’m used to this from you by now,” and I felt gutted. Patriarchal tone aside, I was trying my best, why couldn’t they see that? Years later, I still struggle. I decided to reach out to some of The Mighty’s Super Contributors to see if they related, and boy, did they. 1. “I love to have my room and house clean but sometimes when I’m going through depression and in pain it’s really hard for me to find the energy to clean. Laundry is usually the worst for me and it sits in piles and in baskets all around my room. It’s rough because the mess in my room can make me feel even worse – like I’m a failure. I remind myself that how clean or dirty my house is doesn’t determine my worth as a person. It took me about a couple of months before I was able to clean all the mess and complete my laundry.” – Amelia B. 2. “Most of my messes have loose categories, but the pile on my kitchen table tends to be a free for all. When I’m depressed, the mental effort needed to sort this is too much for me, so it just stays. I did probably clean it a month ago so it’s actually not at its worst.” – Heidi F. 3. “I have lived with depression for as long as I can remember, which often impacts my energy and motivation. One particular instance after my best friend died left my room accumulated with clothing, books, papers, boxes, dishes – you name it – for over a year. I came home one day to clean and organized thanks to some family members who were trying to support me through it.” – Kellyann N. I remind myself that how clean or dirty my house is doesn’t determine my worth as a person. 4. “This is the current state of my kitchen. I’ve been trying to muster up the energy to clean it up for two weeks. I’ve invited friends over Saturday night so that I get that last minute stress to clean up because I’m so embarrassed about its current state…Any focus I have goes to trying to stay on top of my work with this personal stuff happening and there’s nothing left in me to do my chores. The laundry isn’t done, my bed isn’t made, the garbage and recycling haven’t been taken out, and clearly the kitchen is a mess.” – Ameera L. 5. “This is my dining room table. On the days where I both remember to eat and actually convince myself to do so, I pull a dish out of the wreckage, wash it in a sink stacked high with dishes, and put it right back on the table when I’m done. On good days, I clear the table off, but both the mess and my depression can pile up quickly.” – Nera B. 6. “ This is the kitchen island, the spot where everything happens on a daily basis, when I am not curled up in bed. The dog food and medication are scattered with the human food, packages and mail lay un-open and unattended to. Unfinished art projects sit amidst clean dishes that have been drying for 3-4 days and dirty dishes piling up. The dishes may get cleaned every other day, if that, but the rest just stays. It’s cluttered but I don’t have the energy to deal with it.” – Mae   All this to say, you aren’t alone. Your worth isn’t tied to how clean your home, car, room, or bathroom is. Survival is hard, and sometimes it means that you make sure you’re directly taken care of and some dirty socks stay on the floor.  

Kaden M (he/they)

I'm Not Being Rude If I Interrupt You, I Have ADHD

I have a problem with… finishing others’ sentences. Interrupting them before they have a chance to finish their thought. It is something I am not proud of, and for a while, I thought I was simply self-centered. But now I have a better understanding of why I do this. Impulsivity is the main reason. And a fear of forgetting. My struggle with interrupting others is due to my attention-deficit/hyperactivity disorder (ADHD) — it’s a component of hyperactivity and impulsivity. This is further amplified during my occasional episodes of hypomania and mania as a part of having bipolar disorder. I typically don’t share this with people because it sounds like an excuse for rudeness, doesn’t it? In fact, I have been called rude before, particularly during bouts of (hypo)mania. In addition, because of my ADHD, I also have a tendency to want to get my thoughts out before I forget them, which can also lead to cutting the other person in the conversation off. I just wanted to say to anyone who has been on the receiving end of someone repeatedly interrupting you, they often don’t mean it. Majority of the time, there is something else going. How do I handle this now that I have more self-awareness? I apologize, but not excessively. I apologize when it’s needed; I also sometimes give my friends the truth behind my actions — that it is part of a developmental condition and not inherent rudeness. Most people are understanding. When I am with strangers and acquaintances, I am now very mindful. The interrupting and impulsive speech still happens, but I do my best to slow it down and reduce the frequency. I try to breathe, listen and take pauses before responding. Thank you for reading this! And if you relate, feel free to comment below!

Harmful Health Phrases and Mindsets We Shouldn't Use This New Year

2022 is right around the corner (like, in eight days right around the corner). Every year people like to sit and talk about the good, bad, ugly, and downright wild things that people have said, thought, and done throughout the year. From celebrities putting their foot in their mouths to Sia being…Sia , a lot has gone down this year. Living with health conditions can be a daily battle, and that’s not just because your own body and mind may be fighting against you, but also because of the sometimes obnoxious, ignorant, annoying, and frustrating comments, phrases, trends and mindsets from the people around us. That being said, we asked Mighty Staff and Super Contributors what they hope will be left behind in 2021, and here’s what they had to say: 1. “‘But you don’t look sick/mentally ill/disabled!’  Please don’t invalidate our symptoms, they may be invisible, but they’re real.” – Kelly Douglas 2. “The idea that chronic pain can’t cause depression. Living with a chronic illness that primarily presents itself through physical symptoms is exhausting. And guess what? Sometimes I get depressed because of it. Let’s normalize the mental-physical health connection, please.” – Kat Harrison But you don’t look sick/mentally ill/disabled! 3. “‘That gave me PTSD’ or ‘That triggered me’ when what they really mean is that something bothered them or disturbed them, but they don’t actually have PTSD or trauma.” – Monika Sudakov 4. “We need to abandon the popularization of using borderline personality disorder as a descriptor for characteristics. Borderline personality disorder has been popularized by social media, such as TikTok, and we need to remind ourselves that this is a serious illness, not a fad.” – Ashley Nestler 5. “‘I’m about to go on a grippy sock vacation.’ This has become a common Tik Tok joke that’s not funny unless you’re truly on the verge of a psychiatric hospitalization.” – Mel Hebert 6. “Can we please leave, ‘We need to pivot’ in 2021? I’m truly tired of having to constantly be adaptable.” – Sinclair P. Ceasar III I’m about to go on a grippy sock vacation. The new year is a perfect time for new resolutions, so now we can leave these things behind in 2021 for good…or so we hope. What would you add to this list? Comment below and share with us.

Study Shows Telehealth Effective for Borderline Personality Disorder

Despite treatment for borderline personality disorder (BPD) being difficult to access, no published study had examined the efficacy and safety of telehealth treatment for borderline personality disorder (BPD). The current studies that do evaluate telehealth focus on outpatient settings in people without BPD. Given the complexity and intensity of the symptoms (e.g., self-injury, suicidal ideation, rapid fluctuating emotions, impulsivity, franticefforts to avoid abandonment), efficacy and safety considerations have to be made to best adapt telehealth treatment for people with borderline personality disorder. These considerations are especially true for partial hospitalization programs, where people with BPD may be at risk for suicidal and aggressive ideation, may be transitioning from inpatient hospitalization or may need a higher level of care. A new study published in November 2021 from the Rhode Island Methods to Improve Diagnostic Assessment and Services project adapted telehealth partial hospitalization treatment and found that it was just as effective as their in-person partial hospitalization treatment in treating people with BPD. Full access to the study can be found here. The Rhode Island Hospital Adult partial hospital program transitioned to a virtual format when the COVID-19 pandemic began. Patients in the virtual and in-person partial hospitalization program were compared on effectiveness, satisfaction and safety. Both treatment modalities remained similar in their structure and content. Specifically, the study found that patients in both groups reported significant improvement in functioning, coping ability/stress tolerance, positive mental health and general well-being. By program completion, more than 95 percent of patients in both the virtual and in-person program reported they were very or extremely satisfied with their treatment. Likewise, more than 95 percent indicated they would recommend the treatment to a family member or friend. Given the risk mitigation strategies in the virtual program, which can be perceived as burdensome or intrusive, the high levels of patient satisfaction in both groups warrants considerable attention. The safety strategies included daily check-ins, daily updates and information on patient location/physical address, on-call clinicians for emergencies and an emergency contact person. The researchers followed a transdiagnostic approach, meaning they used a treatment and measure that targeted the above mentioned areas of improvement (functioning, coping ability/stress tolerance, positive mental health, and general well-being) more broadly. Some patients in the study were also assigned to the borderline personality disorder specialty track. Thus, one limitation of the study is the lack of a BPD outcome measure. Still, the study highlights transdiagnostic improvements that can be made in BPD. Program completion and attendance were also assessed. The study demonstrated that the virtual program attained a higher attendance rate. This result may attest to the accessibility of a virtual format. The authors described that some of the patients in the program had medical conditions that made in-person treatment attendance more difficult to manage. Notably, several patients who were treated in the virtual program described that even in the absence of a pandemic, they would not have presented to in-person treatment. Limited transportation options and parenting were two other accessibility concerns. This study highlights several key factors those of us with borderline personality disorder encounter in our treatment. We often encounter considerable difficulty accessing quality treatment given the shortage of BPD practitioners, stigma, location and other barriers (e.g., financial). BPD may require a combination of treatment approaches and multidisciplinary teams, such individual therapy, group therapy, or intensive outpatient programs. Potential comorbidities can further complicate treatment. BPD is known to present with considerable comorbidity, including psychological conditions such as depression, physical health symptoms, and other disabilities. For example, one study found greater BPD symptom severity was associated higher rates of later physical health problems, such as headaches, dizziness, stomach aches, back pain, bruises, muscular problems, colds and coughs, even when controlling for depression and anxiety. Another study indicated that while BPD is present in about 1-2 percent of the population, the rate wasaround 30 percent for chronic pain patients (e.g., fibromyalgia, chronic back pain). The presence of BPD appeared to intensify pain scores. In my experience with treatment, accessibility issues were an unbearable predicament that overshadowed my decision to drop out and stop pursing treatment. If I did experience a benefit, such as learning a new skill, the potential progress was significantly reduced due to numerous accessibility issues, and progress did not remain over time. I started treatment at 10 years old and was treated by approximately seven different mental health specialists by the time I was 22. Accessibility issues in treatment fostered feelings of shame, hopelessness, mistrust and being misunderstood. For example, my severe sleep disorder and depression that accompanies borderline personality disorder increased further complications. One of my psychologists usually scheduled me for morning appointments, despite my opposition, to which I would arrive 20 minutes late with only an hour or two of sleep that night. The fact that treatment decreased my sleep and compelled me to drive for long periods of time while sleep deprived produced a negative impact on my well-being. I frequently cancelled appointments and dropped out with little to no improvement. I also live with many other disabilities, including postural orthostatic tachycardia syndrome (POTS). This condition can limit my mobility at times or prevent me from driving. During periods of increased symptoms, along with depression, it may not always be possible to attend treatment, get out of bed or leave the house. It seemed the reasons I needed treatment prevented me from receiving it, and no one cared. People who need virtual or hybrid options for treatment have been advocating to receive it long before COVID-19. We were often denied services that were suddenly created during the pandemic. One significant barrier to this progress is insurance approval/reimbursement, which can hinder attempts to increase accessibility unless appropriate policies are made. It is crucial that virtual options remain post-pandemic, and studies such as these remain an important part to advocate for that change.

Megan Glosson

Why We Don't Need to Change the Term 'Borderline Personality Disorder'

As I recently scrolled through my social media feeds, I stumbled across this article someone shared in a borderline personality disorder (BPD) Facebook group. Although the headline immediately caught my interest, I soon learned through reading the article that it was yet another “expert” pointing out what most of us who live with borderline personality disorder already know — far too many mental health practitioners place unfair judgments on borderline clients because of their diagnosis. Like Mr. Warrender, other professionals say the problem with how patients with borderline personality disorder are treated lies within the diagnostic label. Many therapists and psychiatrists seem to think that changing the label or removing the diagnosis from the Diagnostic and Statistical Manual of Mental Disorders (DSM) will help clients avoid mistreatment or harmful biases. However, even in countries where clinicians have shifted to other labels like emotionally unstable personality disorder (EUPD) or emotional dysregulation disorder, many people still battle the same unfair judgments and difficulties in finding treatment providers willing to take them on as a client. In my opinion, it’s not the label that needs to change — it’s the perpetuation of the stigma that needs to end. When I received my borderline personality disorder diagnosis in 2017, my entire life transformed. I finally had a term to describe the emotional intensity and other symptoms that I’d grown accustomed to living with since my teens, and that label provided a sense of peace. I wasn’t “crazy” or “abnormal,” I simply have a mental health condition that, up to that point, wasn’t diagnosed or treated properly. Receiving a borderline personality disorder diagnosis allowed me to seek out treatment options like dialectical behavior therapy (DBT) so I could learn to not only manage my symptoms, but live my life to the fullest. In fact, it paved the way for me to learn powerful emotion regulation skills and improve my interpersonal communication so I could end the cycle of unstable relationships that consumed my teens and most of my 20s. Without an accurate label for my symptoms, I firmly believe I would not have been able to make the strides in recovery that I have over the past four years. What’s more, my diagnosis helped me provide my loved ones with accurate literature to help them understand the world through my eyes. My friends now understand my extreme fear of abandonment in a way that allows them to offer more helpful support. I also feel like my relationships with my family members have improved as a direct result of our ability to see my behaviors from a new perspective. That’s not to say I didn’t encounter my fair share of biases since my diagnosis ( because I did ). However, like most people with BPD know, the stigma attached to this specific disorder is rarely accurate for the vast majority of people who live with this condition. People who live with borderline personality disorder aren’t inherently “bad” people, and there’s nothing “wrong” with us. Oftentimes the issue is that we simply don’t yet possess the tools we need to deal with the symptoms we live with day in, day out. Without a diagnosis, the proper treatment and non-judgmental, empathetic professionals to provide that care, there’s no chance for us to grow into the best versions of ourselves — yet a life worth living is all any of us want. And this is exactly why I firmly believe that changing what we call borderline personality disorder or abolishing the diagnosis completely will never remove the stigma those of us who live with this disorder face. Whether we call it borderline personality disorder , emotional dysregulation disorder, or something entirely different, many clinicians will continue to judge the entire community based on one individual or what they learned from professors or other clinicians during their training. Does something need to change? Yes, but it doesn’t have anything to do with the nearly 1 in 16 Americans who live with BPD . We need changes in how society and mental health providers view us so that we can have any sort of chance of recovery.