I Know This One: Identity and Object Permanence

Last week I did something exciting. Hold your breath, this one’s gonna blow you away.

My mom told me something about how I was as a child and I disagreed with her.

Yeah, let me give you a minute to pick your jaws up off the floor. Sarcasm aside, this was a big deal for me, although for many people it might just seem like a normal experience. Because I do not trust my memory, my perception, or my interpretations of events. I have struggled with this for a long time. I relied on grades to tell me that I was smart, because I didn’t believe it otherwise. I relied on friends and my parents to inform me that I was kind and interesting and caring.

And if someone said something negative about me, I was suddenly sure that they were right. I’m not sure where this comes from in my brain, but it’s almost as if I don’t have object permanence about myself or traits about myself. Facts slip away quickly, and I find myself uncertain about whether I’m rational and reasonable, thoughtful, needy, demanding, or something else I would never expect. When I get into an argument with someone else, I feel as if I’m losing my mind because suddenly all the things that I had thought so clearly a day or two days ago that were bothering me are gone the moment they say I’m wrong.

I think this is at the root of some of my inability to create a strong and stable identity. I have a hard time feeling secure and certain of myself and my abilities, of my worth in the world, because all those facts are like water in a sieve to me. Of course thanks to depression brain, my negative thoughts stick like burrs, but that means that any identity I have is based entirely on bad thoughts about myself. Then I’m told by family, friends, therapists, everyone to argue with those thoughts. It leaves me in a horrible situation of not knowing who to trust and not being able to trust myself, particularly because I start to question my own memories when someone tells me I should have interpreted things differently.

I don’t talk about this element of my mental health as often as I do some of the others. It’s one that I’ve only started to notice as a pattern recently. I don’t know how it fits in to diagnoses or labels. And more than any of that, it’s the one that puts me in the most vulnerable position, and makes me susceptible to manipulation or abuse, even unintentional. And this is the trait of my brain that leaves me feeling the most “crazy.” It does seem as if I’ve lost my mind, and can’t find any footing in reality. It seems to turn me into a stereotype that can’t fend for myself, and it makes me feel as if I can’t self advocate anymore because who will trust what I say when I can’t even trust my own experiences?

But if I’m committed to transparency about my mental health, and particularly as I start talking about positive milestones in my life, I have to talk about this. Because this moment of knowing with certainty that what someone said about me isn’t true is something I have never felt before. Not only that, but I managed to retain positive or neutral information about myself and then stick up for that piece of information, hold on to it as true even when someone disagreed.

Yes, later I did feel like I had to check in with other people who knew me when I was younger to make sure I hadn’t lost my mind. But it was still a step. It’s one piece that I can rely on and build from. I’m not entirely sure how I helped myself to this point, but I do know that I have been working endlessly on simple reminders. I have started to collect moments and facts. I write down everything that I get done and look back at it periodically. I mark out events in my brain, like the picture I took last year of me stuffing my face with a burrito when I finally felt “recovered” for the first time, or the feeling on Monday when I finally had enough work at work to last me a full day and then some (and it felt amazing), or the generosity I showed when I randomly get people gifts because I can and I want to.

I have made enough lists of my values that now I don’t have to look at them anymore, I just know them. And I know that I act on them whenever possible. I have thought so carefully about what I want my life to look like in order for me to feel comfortable and stable, that I can imagine it in full detail. And I know what I look like, because I simply fill in around the edges of myself until I see my shape.

I certainly don’t understand the world fully, but I think I’m beginning to understand MY world, which means that I know where I fit. As the incredibly cheesy DBT lingo would go, I’m starting to see what a life worth living would look like. That tells me more about myself than it does about anything else. I don’t have to please everyone else. I can do what fits my values instead. I don’t have to trust everyone else more than I trust myself

Which all means holding on to reality a little bit better. Which means I’m starting to remember better. Which I guess means that there’s hope, even when I do feel completely lost. Hope that I will be me someday. I don’t know how to end this because this is certainly not any sort of neat ending or conclusion. It’s the flicker of a beginning, something barely of note except that I didn’t realize what I’d been lacking for so long.

I’ve spent a lot of time in grandiose ideas, morality, black and white ideals, instead of boring practicalities. These things seem appealing to me. Unfortunately what I need to hold on to are the basic, simple facts about who I am and what I do. Here’s to looking for boredom.

 

Autism, BPD, Eating Disorders

This is a completely unscientific exploration of connections between a few different diagnoses that has been helpful to think about for me. This will be a long one because there’s a lot to work through, but I think it’ll be interesting.

I’ve started to notice a lot of parallels between autism and borderline personality disorder, and have also seen that eating disorders or feeding issues are incredibly common comorbidities for both of those disorders. I’m curious about why that is, whether there is misdiagnosis going on, and whether BPD and autism might actually be more similar than most people think.

Let’s start with some facts. Autism tends to be coded male. There are far more boys with the diagnosis than girls, and it can be incredibly difficult for girls to get a diagnosis of autism (girls have a much higher age of first diagnosis than boys, and studies that independently measure symptoms found many undiagnosed girls). Some people have even gone so far as to say that autism is an “extreme male brain.”

The diagnostic criteria of autism are as follows:

A. Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive, see text):

1. Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.

2. Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.

3. Deficits in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers.

Specify current severity:

Severity is based on social communication impairments and restricted repetitive patterns of behavior (see Table 2).

B. Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history (examples are illustrative, not exhaustive; see text):

1. Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypies, lining up toys or flipping objects, echolalia, idiosyncratic phrases).

2. Insistence on sameness, inflexible adherence to routines, or ritualized patterns or verbal nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat food every day).

3. Highly restricted, fixated interests that are abnormal in intensity or focus (e.g, strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interest).

4. Hyper- or hyporeactivity to sensory input or unusual interests in sensory aspects of the environment (e.g., apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement).

Specify current severity:

Severity is based on social communication impairments and restricted, repetitive patterns of behavior (see Table 2).

C. Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life).

D. Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.

On the supposedly opposite side of the spectrum is Borderline Personality Disorder, which is far more common in women, and in many ways is the modern hysteria. It’s diagnosed often in women who are seen as unruly or out of control, is an incredibly controversial diagnosis, and is seen as an extreme “female” brain.

The diagnostic criteria for BPD are as follows:

A pervasive pattern of instability of interpersonal relationships, self-image, and affects, and marked impulsivity, beginning in early adulthood and present in a variety of contexts, as indicated by five (or more) of the following”:

• Frantic efforts to avoid real or imagined abandonment
• A pattern of unstable and intense interpersonal relationships characterized by alternating between extremes of idealization and devaluation
• Identity disturbance: markedly and persistently unstable self-image or sense of self
• Impulsivity in at least two areas that are potentially self-damaging (e.g., substance abuse, binge eating, and reckless driving)
• Recurrent suicidal behavior, gestures, or threats, or self-mutilating behavior
• Affective instability due to a marked reactivity of mood (e.g., intense episodic dysphoria, irritability, or anxiety usually lasting a few hours and only rarely more than a few days)
• Chronic feelings of emptiness
• Inappropriate, intense anger or difficulty controlling anger (e.g., frequent displays of temper, constant anger, recurrent physical fights)
• Transient, stress-related paranoid ideation or severe dissociative symptoms

So these two diagnoses appear to have almost no overlap. In fact they appear to be complete opposites in some ways (extreme emotional reactivity vs. restricted emotional expression). One of the things that is incredibly common in both of them though is misdiagnosis and stigma.

BPD is so stigmatized that some therapists intentionally misdiagnose to protect clients from stigma. However it also has many overlapping features with PTSD, bipolar, major depressive disorder, schizophrenia, and anxiety disorders. Men are often misdiagnosed with Antisocial Personality Disorder or substance abuse. Autism is often misdiagnosed in women as ADHD, bipolar, depression, anxiety, or OCD. There are a few odd things about these high rates of misdiagnosis, the first being that two disorders that appear to be diametrically opposed could have so many similar misdiagnoses.

If we go beyond the strict diagnostic criteria, the behaviors of BPD and autism can look surprisingly similar, especially when we look at how girls present autism. From a Guardian article on autism in girls and women:

“‘Autism is seen as a male thing, and boys are often physical in expressing themselves when unhappy, whereas girls implode emotionally,’ says [Sarah] Wild [head teacher at a school for autism]. ‘Boys tend not to be interested in contact and friendship, whereas girls desperately want friendship, they become obsessed very easily if they focus on someone as ‘theirs’ – whether a girl or a boy – and they yearn for boyfriends.’

Girls with autism are likely to worry about body image and get very involved with TV series and celebrities, says Carol Povey, director of the NAS’s centre for autism. And there is a clear association between autism and eating disorders, as a report by Cambridge University’s autism research centre, led by Professor Simon Baron-Cohen, notes.

While boys tend to be diagnosed as young as three, late diagnosis can be a problem for girls, whose behaviour can be dismissed as “teenage hormones”. ‘They are full of emotion and implode into isolation and depression if things go wrong,’ says Wild. Things seem to start going really wrong at about age 13, she says, when many become school phobic.”

These differences end up creating a very different picture of autism in girls and women than in men and boys, one that looks far more similar to BPD. Both diagnoses can include serious self harm or suicidal ideation, controlling behaviors (especially in relationships), black and white thinking, feeding issues/eating disorders, trouble with social situations (including anxiety), depression, and sensory issues. For those with BPD, life often feels like it’s lived without an emotional skin, and that can come with strong reactions to sensory stimuli. For those on the spectrum with strong sensory seeking needs, behaviors can start to look impulsive. BPD tends to be diagnosed during the teen to early adult years, and girls also are likely to get an autism diagnosis in later childhood to early adulthood. And in both cases, the lack of a diagnosis can be a huge source of frustration, confusion, depression, and welled up emotion.

Another similarity is the diversity of presentations of each of the two disorders. Because of the way criteria are structured within BPD, it’s possible for two individuals to both have the diagnosis and only have one overlapping trait. Autism is similar in that it affects multiple areas of functioning, which means there are thousands of different permutations of symptoms and behaviors that can appear.

Both BPD and autism are distinctly underdiagnosed, with more men having trouble getting a BPD diagnosis and more women struggling to get an autism diagnosis. From http://psychcentral.com/news/2009/05/25/borderline-personality-disorder-difficult-to-diagnose/6070.html

“The study included 70 adults who met the criteria.

All had been given a diagnosis from the fourth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) in the past and had also seen a mental health professional in adulthood or been prescribed a psychotropic medication.

Yet, 74 percent of the patients who met the criteria for the condition had never been diagnosed with borderline personality disorder in the past, despite an average of 10.44 years since their first “psychiatric encounter.”

What’s hisface examines many of the ways that BPD and autism can look similar: explosive anger or meltdowns, intense relationships mixed with difficulty getting close to many people, serious miscommunications. If you look at an individual who self harms, has serious anxiety and anger issues, attaches to one person and has difficulty connecting with others, is incredibly sensitive, and who sometimes engages in intense and seemingly odd behaviors to fulfill stimulation seeking, would you assume BPD or autism? Because it could go either way.

Of further interest is the fact that BPD has incredibly high rates of comorbidity with eating disorders. There is good evidence that women with anorexia have autistic traits, and that individuals with autism are at high risk of developing eating disorders. Some studies have even shown comparable levels of emotional processing and executive functioning between those with anorexia and those with autism. Feeding disorders are also incredibly common with autism.

Most of my interest in autism came initially through the lens of eating disorders. Difficulties with textures, rituals around food, OCD, and other highly controlling behaviors are incredibly common with eating disorders. These kinds of control oriented behaviors are hallmarks of autism.

Control is not a word that most people associate with BPD, but I’m not sure why. In my experience, the more out of control someone feels, the harder they try to cling to control. All of the BPD symptoms that I have are the things that have pushed me to develop intense rituals and rules for myself, out of fear that any deviation will lead to complete chaos. Others who have comorbid BPD and eating disorders that I have spoken to (entirely anecdotally) have also felt that they use the control of the eating disorder to cope with the intensity and chaos of the BPD.

Also anecdotally, many of the folks that I’ve talked to on the spectrum talk about having rituals so that they can feel more in control when they are overwhelmed by extreme sensory input or because of difficulties with theory of mind. The OCD tendencies that I have and the information that I’ve read about OCD indicates that rituals, control, and rigidity in OCD also stems from a fear of being out of control, a fear that the world could change or fall apart or go wrong in some unknown or drastic way if you do not engage in the rituals. Chaos is often what leads to extreme control.

For those on the spectrum, that often comes in the form of social interactions that make no sense and sensory input that is overly intense. I’ve also heard many on the spectrum say that in contrast to the assumption that they have no empathy, they actually have an excess and simply can’t figure out how to make other people happy or feel better. The emotional elements of this explanation ring familiar to someone with BPD: other people seem unpredictable, swinging from perfect to evil in a day. You just want to be good enough, kind enough, the best possible person so that no one will be sad or unhappy or angry or want to leave you.

Especially of interest to me are the sensory elements of BPD, which I could find almost no research about at all. BPD is well known for coming with extremely strong emotions, but in my personal experience, that often comes with sensory sensitivities as well. Emotions aren’t just experienced in the head: they’re experienced in the body. I have to regulate my food and sleep extremely carefully in order to be functional, I have strong reactions to textures, and as someone who is often overwhelmed by my emotions I can’t handle crowded, loud, or otherwise overwhelming places very well.

And when you add in an eating disorder to BPD, you get some serious sensory sensitivities in the form of taste, smell, and touch (often aversions). All together it makes me wonder if BPD and ASD are all that far apart, or if they both might be pointing to a variety of disorders that look similar but have different etiologies. I wonder if some of those disorders overlap, and gender is playing a big role in who gets what diagnosis. I wonder whether concepts like a sensory diet could be helpful for those with BPD or whether learning concrete social skills like setting a boundary could be helpful for those with ASD.

Obviously all of this is speculative, and it seems unlikely that BPD and autism are the same thing. But I do think that the strict delineations between personality disorders and autism, or simply the received knowledge of which disorders are “like” which other disorders might not be helping folks get accurate diagnoses or useful treatments. There are more crossovers than appear at first glance.

Tattoos and Reminders

Sometimes I have a hard time knowing who I am. This is pretty classic in Borderline Personality Disorder, and in that case it’s called Identity Disturbance. While I don’t have the same kind of flip flopping of actions, values, or thoughts that some people do, I often have a hard time figuring out what I care about, what I want, who I am, whether I’m good enough or not.

And sometimes it feels like I just forget myself, forget who I am or what I want. I flip flop between caring about my own health and wanting to self destruct. I forget my larger goals, or why I want to be healthy. I’ve gotten a little more stable, but there have been points in my life where I can flip from wanting to restrict for a week to feeling committed to putting food in my body in the course of a few hours.

In the movie Memento, the main character has amnesia and reminds himself of important facts about himself by tattooing them on himself. His name, phone numbers, facts about his life. All are branded on his skin as a way for him to learn about himself again each day, each time he comes back to consciousness with a blank slate.

Sometimes I feel like that’s how I remember who I am. My first tattoo was of music, a dotted sixteenth to remind me that I like to be unnecessarily different and a little offbeat. My second was the eating disorder recovery symbol, to remind me as often as possible that I am committed to recovery and that my health is important. My third was a compass to remind me that I can explore, but always find my way home. Each of these are things that I lose when I get too wrapped up in myself or stress or my to do lists. They’re things that I forget, or that I question, despite knowing that they’re important to me.

For people who easily have a strong sense of self it might seem ridiculous to brand your skin with your values or life choices. I know people who ask “but what if you don’t like it anymore in five years?” Well for your information I probably won’t like it in about five days, but that’s the point. The point is that I want to remember what it felt like when I got it, why I chose it, what was important to me in that moment so that I can come back to my values later in life, or later today, or whenever it is that I feel as if my mind has turned into a foreign influence that is pushing me in ways I don’t understand.

Sometimes I don’t know why I ever thought that being healthy was a good thing. I don’t remember that I did. It feels as if that was always some sort of outside influence that didn’t want what was best for me. Until I look at the tattoo of the recovery symbol on my hip. I chose to spend the time, money, and pain to have that inscribed on me. It was no one else’s decision but my own. I wanted to remind myself every day that recovery is one of my values.

It is proof that I thought differently, that I can think differently again. It’s proof that I have good days. It’s proof that I do value things that are not perfection or thinness or rules. The more reminders I have, the more stable I feel. It’s as if I’m building a new body for myself that tells me who I am.

The permanency is the point. It’s the only thing about me that seems to be permanent.

What It’s Like: Borderline Personality Disorder

I just recently read a post by Ozy Frantz about what it is like for them to have BPD. I also have a BPD diagnosis (although I have BPD traits rather than a full diagnosis of the personality disorder. For more info on the difference see here), but it got me thinking that I don’t very often talk about the overall experience of what my different diagnoses mean for me. I have a big ol’ mix (EDNOS, major depressive disorder, generalized anxiety disorder, and BPD), but there are definitely different strands that I can pull out that seem to correspond to each.I was also surprised to find how good it felt to simply read another person’s general description of their symptoms.

So in the next few days I’m going to be spending some time in my own head (big surprise I know), talking about what it’s like to experience these different mental illnesses. Disclaimer: I can’t speak for everyone. My experience of each will be determined by all sorts of things, not least the fact that I have quite a few comorbid disorders. But I do want to make a space to talk about the overall experiences rather than particular issues that have set me off on a day to day basis.

I’m going to start today with borderline personality disorder. One of the most common descriptions of being borderline is that it’s like living without emotional skin. People with borderline tend to be highly reactive. Let’s say everyone starts at a baseline of relatively neutral emotions. For me, any stimulus will result in my emotions spiking higher than most other people’s, and I also have a really hard time returning to base. This means strong emotions that last for an unnecessary amount of time. For many people this includes extreme anger, but I’ve developed the great coping strategy of just only ever getting angry at myself because the strength of my anger and a family history of anger problems means I’m terrified of being angry.

One of the things that’s most frustrating about BPD is that I can be entirely aware that I tend to overreact and still have extreme emotions, which leaves me struggling to figure out where reasonable is.

Another classic symptom of BPD is self harm, which I’ve been free from for almost four months (woohoo!). Typically I use it to regulate either extreme emotions or extreme dissociation. Speaking of dissociation, welcome to another fun part of having BPD. Dissociating is essentially letting your brain leave your body or feeling like you’re not inhabiting your body. Most people do it on a really low scale in the form of daydreaming, but in extreme forms people can forget what they’ve done for hours at a time. I tend to simply shut down when things get overwhelming. I fall asleep, I can’t move my body, I just turn it all off. It’s scary, since I’m never entirely in control of it, and it often feels like being trapped just outside of my head without any way to get back or influence the world around me.

People with borderline also tend to have two problems that are really tied together: difficulty holding together a self identity and an intense fear of abandonment (also found in the form of either deifying or demonizing people they’re in relationships with). I have always had trouble with knowing who I am, and I have this suspicion that I forget that I really exist when there’s not someone looking at me or talking to me or reminding me what I am. This might be why I write so much because it’s solid evidence of who I am and what I think. But I really define myself through my relationships and through the perceptions that others have of me. Again, this goes back to the idea that I can’t figure out what “average” or “normal” or “reasonable” is, so I don’t know if I’m particularly smart or particularly clumsy until someone else tells me what normal is and how I fit in. Similarly to cutting anger out (unless it’s directed at me), I also tend to take all of the negative feelings I have towards people and turn them towards myself instead, so I very rarely switch from deifying to demonizing and instead just make lots of excuses for bad behavior.

Like a lot of other borderline people, this means I can be somewhat manipulative. I’m highly, highly aware of it at this point and can see myself coming up with useless little tests (did that person text me first? If I don’t tell them I’m upset are they paying enough attention to tell? Do they care enough about me to demand that I take care of myself when I’m resisting?), so I’ve started to combat it by being as ridiculously open as possible with people I’m in close relationships with and calling myself out. Hopefully this is some evidence that a diagnosis of BPD does not condemn one to a life of being a manipulative asshole, as there are some evidence based skills to help out.

Last but not least, I also feel really empty a lot of the time. Possibly because I have a hard time knowing what appropriate goals are, or because I think everyone actually hates me and is going to leave me, or because I really just don’t know who I am (and for a lot of silly philosophical existential reasons about whether there’s a point to being alive), I feel very hopeless and I’m often overwhelmed with a kind of despair. This might also just be depression, but there is a certain flavor that I think is borderline and that tends to come with being bored. It’s a feeling of terror that nothing will ever change, that my mind won’t stop treating me like crap, that there’s just too many feelings and thoughts in me to just exist. I’m really, really bad at being bored, and I start to get very self-harmy and very twitchy and very desperate to do something worthwhile the moment I get bored.

I’d love to hear in comments from anyone else about their experiences with BPD. Do these things ring true for you? What’s different?

The Reality of Chronic Depression

I’ve known for quite a while now that I have chronic depression. I first struggled with it when I was 14 or 15 and got hit with my first major bout at 17. What followed was a good five years of nearly constant depression, with some slight reprieve here or there. Depression runs in my family, as do a variety of other colorful diagnoses, making it more likely that my depression has genetic components and thus will not change with changes in circumstances. I’m not sure what other signals I would need to illustrate that mental illness will probably be a part of my life forever, but if I did then a diagnosis of a personality disorder and an eating disorder (both widely known to be stubborn creatures that never really go away) would do it.

But despite knowing all of these things for years, I’ve always had some measure of hope that things could get better. I mean they had to get better. There was no way I could continue living if they stayed the same. Some day my brain would switch back over into “not utterly unhinged” territory and I’d be able to make it through days at a time without bursting out into tears or struggling to breathe due to anxiety. There was another version of myself that I imagined, maybe not one who was ebullient and joyous and energetic, but one who was functional and content. That version was waiting for me if I chose to accept her.

This past summer, I finally knew what it was like to be her, at least for a while. Getting relief from depression is one of the most amazing feelings I’ve ever had. You get tiny realizations here and there: it’s been weeks since I last cried. I’ve laughed every day this week. I ate three meals yesterday and didn’t notice until now. Each one is a victory, a delight. I’d find myself giggling in joy over my life for no reason.

Last night I got hit with an attack of the jerkbrain. It’s been dark and cold lately, something that’s always hard for me. The day started out well enough, but somewhere in mid afternoon the undercurrent of worry that asks whether I’ve done enough today to be worthy of living started to swell. What if my life is not enough? What if I never do anything worthwhile? What if no one actually likes me? Behind the questions is simple despair. There are no words to make sense of it, and it comes from nowhere. It just hovers over me and trickles in when I have spare moments. Sometimes it brings its friend, panic, which takes up residence in the lowest pit of my stomach and bubbles up and over into my heart, just to keep me on my toes.

I know how to deal with these things. I talked to my boyfriend, I left the house, I gave myself permission to go out for dinner instead of cooking. I had some ice cream and played Dungeons and Dragons with my friends. I systematically listed all the things I needed to get done in the next week and ticked off all of the ones I had already completed, making it abundantly clear that I was not behind on anything. The feelings receded and today I feel average.

What I don’t know how to deal with, today, in the aftermath of that little depressive episode, is the reality of chronic depression. I knew before that it existed, but it has only been with the contrast of feeling good that I’ve internalized I am never safe from my own mind. No matter how much work I have done or will do, no matter how many wonderful people I have in my life, no matter how many things I accomplish or if I find my dream job, there will still be days or weeks or months during which everything will be a struggle.

On some level I always knew this, but feeling it is different. The randomness of a depressive attack is what hurts the most. It makes me feel childlike, dependent, incompetent. It reminds me that my mind isn’t really my own. It says that recovery is always temporary. This is terrifying. There is nothing more scary to me than the possibility of feeling the way that I did for the last five years. Nothing except for the sure knowledge that I will feel that way again, there is nothing I can do about it, and I don’t know when it will hit. Life is Russian Roulette.

And tied into all the fear is the inability to explain it to the people around me. Sure, they get it, but when they ask what’s wrong and all I can say is “I’m worthless”, they’re left trying to help an unhelpable situation. I’m afraid to inflict myself on other people.

I’m reminding myself today that the people who love me see something in my ability to continually feel like this and continue on that is worth caring for. I’m reminding myself that chronic does not mean constant. I’m reminding myself that the episodes are smaller and shorter now, and that I get so many happy days. I’m reminding myself that when I think about my own survival, I am in awe of my own strength. I’m reminding myself that writing that sentence is hard and I did it anyway.

The reminders help. I know that chronic depression doesn’t have to define my life. But under the reminders I’m scared for the next bad night.

Identity and Anxiety: Struggles of Object Permanence

I had a realization this weekend. While I was prepping for a pub crawl with my boyfriend, I noticed that he kept wandering off to go grab things or do something else, and inevitably I would wander after him like a lost puppy. At some point he mentioned that I didn’t have to come with him everywhere, and jokingly I yelled “I don’t have any object permanence without you!”

Of course as is true with many of my jokes, there is a fair amount of truth hanging out in the middle of that statement. While it’s not true that I become worried about my own existence when I’m in a room alone, I do hang my sense of identity on other people’s validation and understanding of me far more often than is healthy. When I haven’t talked to anyone in too long, I start to wonder who I am and what I’m doing. Do I actually want to write all these things? Am I actually an empathetic person? Am I really intelligent or do I just fool people into thinking that?

My brain functions in comparisons. What does it mean to be smart? It means being able to understand more than other people, reach conclusions faster and better, speak more clearly or convincingly, or know more about more things than others. What if there are no others around? Then I would have no idea if I was smart or not. I assume that my experience of the world is the same as anyone else’s and the only times I know that there’s something good about me is when someone tells me that I’m different than others in some fashion: kinder, more compassionate, smarter. And so I crave those validations more than anything else. Without them I have no idea who or what I am.

One of the symptoms of Borderline Personality Disorder is a lack of self identity, an inability to solidly ground your sense of self without help from others. It can be one of the most difficult elements of the disorder to combat because it requires a fundamental reframing of who you are and how you exist in relation to others. When your identity is a comparison or a response to others, who you are is wholly dependent on them. In some ways, you cease to exist autonomously, because when the people around you stop talking to you or paying attention to you, you stop knowing who you are or what you should do.

In some ways, for me, this difficulty stems from a deep desire for objectivity. I am a perfectionist and I want deeply to be right about everything. That means that if I call myself intelligent, I want some sort of absolutely certain standard to which I can point. Comparisons are the only standard I’ve got. It’s my uneasy truce with the fact that in the grand scheme of the universe, “I am intelligent” is a meaningless statement. It may not be true that others with BPD crave this certainty the way I do, or that they use external validation because they’ve come to the conclusion that all meaning and knowledge is relative and self-made. But there are lots of parallels between my huge, existential temper tantrums and the concrete confusions of those who are struggling to define themselves independently.

So here are some of the conclusions I’ve come to about how to build a sense of self when all you want is for someone else to tell you who and what you are.

1. Stop asking. Seriously. It’s enabling. If you’re starting to feel uncomfortable about something (am I mean? am I stupid? am I annoying?) first try checking in with yourself and looking at some facts instead of getting someone else to give you the answer. Other people aren’t always around and other people can leave and sometimes you have to be ok on your own. So before you ask for reassurance, reassure yourself. Learn how to use facts and experiences to build up a sense of self. Am I annoying? Well, I have a lot of people who seek out my company, so probably not.*

2. Think about your values. Consciously. Constantly. Remind yourself what actually FEELS important to you. A great litmus test on this is to check in with yourself when you start feeling guilty or ashamed about something. Why are you feeling this way? Is it because someone else has told you that your behavior is horribly wrong, or do you think you’ve actually done a bad thing? If option 2, this is pointing towards one of your values that you have violated.

3. Practice uncertainty. Seek out circumstances in which you won’t have a concrete answer or label for something and just be with it. Get used to feeling like you don’t have a clear answer. It may never feel awesome, but you can start to desensitize yourself to it and get through the rough patches by knowing that there will be times that you feel confident and clear about who you are (protip: these are often times when you have just accomplished something, made a big decision, or spent time with people you’re comfortable around).

4. Labels can be really helpful. Sometimes it’s too hard to come up with a complicated self definition when you’re in a moment of uncertainty or fear or need. Having a list of go to’s can be helpful. “I’m a writer” is one that I rely on often, not only because it is so deeply true that I cannot imagine ever being anything else, but also because it gives me a path forward to start to figure out other elements of myself: writing them down. The label gives you something to rely on when you’re struggling. They don’t have to define you forever, but they can be a helpful stepping stone towards identity if you just want something simple.

5. Talk or write about it. It’s easy to get lost in your own head, but if you have to put words to who you think you are, it can clarify what’s actually important to you and how you think of yourself. You can also start to compare versions of yourself if you have a record (whether in writing or through a friend’s memory), and figure out either how those versions fit together or whether there’s one that doesn’t fit as well as the other. It can help you prioritize the elements of yourself and keep them in balance. That might sound super woo woo but all I really mean is “how much time and energy do I want to put into this interest/value, and how much weight do I want to give those concerns?”

6. Start building identities instead of identity. When there’s only one way you define yourself, it’s easy for it to be fragile. That identity has to hold all of you, be flexible enough to explain you in different contexts, and be 100% right all the time. Multiple identities lets you account for the fact that we’re different in different circumstances and no one identity is objectively you all the time. It gives you more flexibility and space to be and do different things.

These won’t solve any serious identity crises (for which I would suggest some therapy), but they are good ways to keep up a practice of strong self-identity if you struggle with your sense of self.

*of course sometimes it’s to the benefit of a relationship to check in and make sure the other person isn’t actually trying to send you signals that mean you’re horrible and they hate you, just for clarity’s sake

Talking Over

Yesterday I posted about a personal experience that I had. I identified certain things about my identity and mental health, and mentioned some things that were helpful for me in terms of both of those things. The majority of the post was about things that pertained to me and me alone, with the suggestion that perhaps others could try as well because I had found it helpful, so maybe it would be helpful for others as well.

Now overwhelmingly, the response has been positive, but I did get one comment that summed up for me all that is wrong about talking over another person and their experiences.

“Well first off she should stop telling people she is asexual. As she isn’t. She made several references to sexual or romantic relationships she has had in the past. And never once did she say oh I hated the sex part….

Second she right love is awful painful for a borderline and most do get clingy. But this whole if I don’t have sex with you I can love you so hard thing is kinda of not really true. She just removed added simulation to her emotions. Yea borderline emotions are intense and painful.they lead to thinking crazy. But the key part she left out is.you don’t have to act on those feelings. Or thoughts. That once you start learning how to wait them out you learn how to think through them and separate the borderline b.s from what’s actually happening…

All she did was remove an emotional trigger.. and her fb experiment will bite her in the butt when all those friends don’t start giving that love back when she crashes again. But that’s just what I think.”

Normally I don’t take the time to respond to comments like this because they’re awful and just deeply unhelpful, but the problems with this comment are problems that I see over and over and so I wanted to take the time to break down why this isn’t actually constructively engaging with the ideas that I presented. This is a classic example of talking over someone.

So first and foremost, when someone identifies themselves (whether as asexual or bisexual or pansexual or whatever) you don’t get to tell them they don’t identify that way. Identity is complex and personal, and no human being is the Grand High Judge of Sexual Identity. This is one of the most common ways that sexual minorities get fucked with: by others defining what they are and why. It hurts absolutely no one for an individual to identify in the way that they find most compatible with their life experiences, but having your identity undermined or denied is quite painful (and especially for asexual individuals leads to things like corrective rape). As a corollary to this, if you are going to play Sexual Identity Police, at least understand the definitions of the identities you’re policing. Asserting that someone can’t be asexual if they don’t explicitly state they hated all the sex they’ve ever had fundamentally misses what asexuality is, and worse it demands that anyone who is asexual give personal information about their sex lives in order to legitimize their identity to randos on the internet.

Basically, the next time someone tells you how they identify and you feel the need to challenge it, remember that what you’re essentially doing is ignoring someone whose identity puts them in a vulnerable position because you Know More and don’t care about whatever thought they have put into identifying that way.

Now the rest of the comment seems like it’s less harmful because the commenter specifies that it’s just her opinion. The problem comes when she imperiously declares what will happen in my future and what I’m doing with my emotions. This is a nice bit of mind-reading and psychic abilities. I’m impressed.

When someone with a mental illness brings up something that they tried that seemed to help them out, telling them that they’re wrong and that they’ve actually just hurt themselves is incredibly invalidating. While you may have had a different experience from theirs, that doesn’t mean that you get to ignore the words that they have actually said or the experiences that they’ve actually had. If your depression didn’t get better through exercise but someone else says “I tried exercise and I’m really happy with how well it’s working. If you’re interested you could try it too”, the appropriate response is not “You don’t actually feel better! It’s all a lie! Exercise doesn’t work!”

The secret (not so secret) about experiences is that they’re personal. Different things work differently for different people. It’s easy within the mental illness community to get defensive or catty when someone else copes differently from the way you do. It sucks to see someone else doing well if you yourself can’t find good coping mechanisms. But despite how easy it is, it’s a horrible plan. If someone isn’t asking for advice, don’t give advice. If someone did something differently than you would have, you can just move the fuck along. The more we perpetuate the idea that there’s a “right” way to recover, the worse off everyone will be. It’s simply not true that her way of dealing with BPD is the same as my way of dealing with BPD, but that doesn’t have to come with a judgment.

I don’t really care if this person fundamentally misunderstands why I did what I did or how my asexuality is interacting with my BPD or doesn’t get that the point of my experiment wasn’t to just take sex out of love but rather to see what it was like to be open with love and love more people more fully. What I do care about is the implications of her comment that I’m doing something Wrong because I didn’t do what she’d do. I care about the implication that she gets to decide what identities and treatments are better for random people she’s never met. I care that this is considered appropriate dialogue on the internet.

It’s not dialogue. It’s talking over.

 

Taking the Long View: On Recovery and Motivation

Recovery from a mental illness is a rough gig. I’ve written many times before about how I wish people would be more honest about just how difficult it is and what that difficulty looks like. Right now, my motivation is low. I want to be done with this stupid, frustrating, painful process. I want people to just leave me alone to wallow and make bad decisions. I want to be allowed to feel bad.

This is basically how I feel all the time right now

Now in the traditional narrative of recovery, this means that I’m slipping. It means the “eating disorder voice” or the depression is getting louder. It means that what I really need to do is double down and fight harder. It’s part of the “roller coaster ride” of recovery. If I don’t nip it in the bud though, then I’ll have given up, I’ll have wasted my progress. I’ll be back to square one, fallen harder than I did the first time and it’s all because I didn’t have “the proper motivation” or I didn’t “fight hard enough”. So if I’m slipping I need to keep my eye on the prize of recovery, think about how great I’ll feel, post a few affirmations around my house, and remind myself once again that I can’t live my life the way I have been living it (because who wants to live in the hell of an eating disorder if you can have recovery, amirite?)

If I was telling the story of my eating disorder, that would be the expectation of how I’d frame this. But that is not the reality. Here is the reality.

Recovery sucks. By most basic cost/benefit analysis standards, it’s a really risky, difficult, long venture. It takes flipping forever, and the time that you put into treatment is not fun. In fact it’s more than not fun: most of the time you feel even worse during treatment than you did when you were happily living out your delusion that starvation was the way to a great life. Things have suddenly gotten a whole hell of a lot more complicated and you can’t just rely on rules anymore. So say you’ve been trucking along in your mental illness and then treatment comes and hits you like a ton of bricks. You spend the next 2/3/4/5/forever years working through mountains of crap. And those years SUCK.

And the more you realize that they suck, the more you realize that a lot of the suckiness will still be there even if you do “recover” because life isn’t easy and being healthy isn’t easy and it’s hard work to enforce your boundaries and balance your needs with the needs of others and fight against sexist and damaging media and somehow put together a clear and cohesive identity that can stand up to the trials of life. So you get this picture that in the long run you’re going through a whole hell ton of suffering right now to maybe feel like you can cope with the fact that life is really hard later.

Now pile on the fact that it often looks as if you’ve made no progress whatsoever. Seriously. I’ve been at this for about 3 years (with the same therapist), through intensive programs, groups, dieticians and many, many, many hours of therapy, and a lot of commitment. Three years is a long time to be spending at least 2 hours every week in therapy and most of the time in between wrestling with all the hard questions. And yet when I think about the things that really get in the way of feeling content or grounded, I see no change. Perfectionism still drives me. I still feel unlovable. I still cannot accept praise and focus exclusively on the negative. I can still be flattened emotionally by one negative comment. I still personalize, I still tend towards black and white thinking, I still feel anxiety for no reason, I am still afraid of social interactions…

Logically, it makes sense to be a little low on motivation when there is little evidence of how far you’ve come, much evidence of the pain you’ve suffered and will continue to suffer, and no guarantee that things will be a whole lot better if you continue to work (for another 3/4/5 years?). Part of recovery is trying to make sense of what is worth it and what isn’t, what life can or can’t be like. This isn’t some sort of slip, this isn’t an indication that I just need to fight harder. This is coming to grips with reality.

But there’s another truth and it’s one that I’ve had a really hard time accepting. It’s about the long view. I spent the better part of 20 years developing these really bad coping strategies. It will take me a long time to change them, nearly certainly more than 3 years. For many things that I care about I am willing to invest huge amounts of time (schooling as an example), often because I can see that the end goal is worth it. And many times I can make these investments on faith (when someone tells me that I’ll get a diploma at the end as an example). With nearly everything else in my life, I can take the long view; I am willing to put up with the pain of the now to get something in the future, even when that something isn’t happiness or a perfect life. Why does the pay off for treatment have to be held to a different standard?

Now there are very real differences here. I like school, the pain that I’ve experienced while in treatment far outstrips anything else I’ve ever felt, and the evidence I have of the benefits of recovery aren’t as strong as the evidence I have of many other things (that, for example, a higher degree would make my life a lot easier). Recovery is harder than anything else I have done in my life because when I look at it logically I can’t guarantee that I’m making the right choice to pursue it. But if I look at the long haul, I can see that I can’t come to the conclusion that it’s failed yet. The experiment has to continue. And I do believe that when people are waning in their motivation, it’s because they are re-analyzing the long view and that view is scary.

But I hope others can join me in realizing that it has to be long, but we are capable.

 

 

 

Falling Through the Cracks: When the DSM Can’t Find You

This week in my DBT group, we were talking about what Borderline Personality Disorder is and how it’s diagnosed (DBT was originally formulated for BPD). Essentially, there are nine traits that are used to diagnose BPD. If your diagnosing therapist sees five or more of them in you, then you are diagnosed with BPD. If you have less than five, but still have some, you are diagnosed with what’s called BPD Traits. I had never heard of BPD Traits before, and I don’t think most people have. Insurance is far less likely to cover something that sounds subclinical like that, and it’s far less likely to be understood by the general public. It simply sounds less severe, right?

 

Unfortunately, this system has a few major flaws, and it seems to me that these flaws are indicative of many of the problems with the DSM as a diagnostic manual. The main problem with this system of diagnosis is that many of the traits of BPD are things that everyone has to some extent or another (things like anger issue, or efforts to keep people from leaving you), and so they only become diagnosable when they seem to be excessive or problematic. This leaves a great deal up to the discretion of the diagnosing therapist. It also means that that therapist has to draw a hard line about what counts as problematic and what doesn’t, when in reality these traits exist on a spectrum. So you could be just over the line and counted as having the trait, or you could be so far over the line you can barely function on a day to day basis, and in the eyes of the diagnosis, you have the same trait.

 

This also means that the difference between BPD and BPD traits isn’t as clear cut as it might seem in the first place. For example, someone with BPD might be just over the line on five traits, but someone with BPD traits might be way, way over the line in four. Who’s to say which is more severe, or that one should receive a full diagnosis that allows them access to treatment, while the other receives a diagnosis that gets them almost nothing?

 

Overall, this illustrates something that is definitely wrong with the DSM: mental illness and mental traits all exist on spectrums. There is no on or off switch to depression, anxiety, paranoia, or any other problem that may be diagnosed as a mental illness (with the possible exception of hallucinations). However in order to diagnose someone (and particularly for that individual to gain coverage of treatment), symptoms are treated as present or not present. Occasionally we use modifiers like “severe” or “mild”, but more often than not it’s either there or it’s not.

 

This seems to be a recipe for disaster for people whose symptoms either don’t present as traditionally understood, who are barely subclinical, or who have an odd constellation of symptoms. I find that I often have this problem: I have lots of issues (oh LOTS and lots). I have bits of OCD, OCPD, ADD, BPD, depression, anxiety, bulimia, anorexia, and really probably a whole host of other things. But because many of them are subclinical, or I don’t have the right pairings to fit into a particular diagnosis, I have been left without any sort of personality disorder diagnosis, or larger diagnosis to fit it all together. Despite how severe my eating disorder was, I was lumped in the EDNOS category, which is far less often covered, and is often treated with less respect and as less severe than other eating disorders.

 

This is a serious problem if we want to provide proper services for those people suffering from mental health issues. We shouldn’t have to wait until a symptom is truly interfering with someone’s basic functions before we give them help. There are many problems with the DSM, and trying to posit a replacement for it is extremely difficult, but one element that really could use replacement is this all or nothing thinking. There is no “partially depressed” or “sort of ADD”. You either have it or you don’t. One improvement could be seeing mental health on a spectrum. We all have different traits, and many of those traits are spectrum style traits. Understanding that moving towards the extremes is always a problem is one great way to view mental health in a more understanding and helpful way, because it allows us to try to help everyone move towards a more balanced place, and could allow us to provide treatment for those who have not yet reached the critical zone.

 

Another issue with this system is the amount of discretion that it allows for the diagnosing clinician. Let’s look at a particular example. One of the criteria for diagnosing BPD is “inappropriate, intense anger or difficulty controlling anger”. This is fairly vague. What counts as inappropriate anger? How might things like race and gender fit into this (hint: black women will always be viewed as having inappropriate anger)? Shouldn’t there be specific examples of things that might constitute inappropriate anger, or the consequences in someone’s life for “difficulty controlling anger” or the number on an emotional scale of what constitutes “intense” anger? How often does one need to be intensely angry to get this trait? All of these things are left up to the discretion of the diagnosing clinician, and unfortunately this allows for a lot of bias.

 

There is a difficult balance here, because having that kind of specificity means that you could be very close to a diagnosis, but not quite reach the correct number of episodes, or the right “level” of anger to reach diagnosis. It seems to me that having these specific levels combined with a spectrum view of disorder would allow clinicians to have less individual discretion that can lead to variability in diagnosis, but would also allow more people to get the treatment that they need. It is widely recognized that we need some changes in the DSM, but these particular issues are ones that I have seen in action in myself and in people around me, and that seem as if they could be fixed without great difficulty. Get on that DSM.

Dissociation: What Is It, How To Help

Dissociation is a major factor in a number of psychological diagnoses. One of them is Borderline Personality Disorder, something I have at a subclinical level. Dissociation is often overlooked as an element of mental illness though. People rarely discuss it, and unlike “triggers”, it’s not thrown around as an explanation for behaviors. However dissociation is very real and has some serious consequences. It’s also something that many people experience without knowing what to call it or how to deal with it, and it can be debilitating and terrifying. For these reasons, I’d like to give an overview of some of the ways I’ve experienced dissociation, and how I’ve fought back against it.

To read the rest of this post, please visit Aut of Spoons.