Neurotypicality Is Not the Goal

Disclaimer: the person and tense in which I write in this post change throughout because I found myself fairly distressed trying to figure out who I was speaking to. Basically if you’re anyone who has any influence over someone who is neurodivergent and their treatment, pay attention.

Earlier this week I posted about some of the downfalls of ABA and was rightly called out on the fact that I forgot to include one that is incredibly important: ABA often pushes autistic people to behave more “normally” just for the sake of being less autistic.

This is a larger issue than just the autistic community. This affects everyone who is neurodivergent or mentally ill in any way. Because while the goal of therapy is ostensibly to help people live content and healthy lives, many therapists often forget that what they perceive as “good” or “happy” isn’t necessarily what their clients want. That means that acting neurotypical often becomes the goal. This is especially true for kids or other populations that can’t easily advocate for themselves, like people who are nonverbal.

Think for a second about treatment for people with autism. This is one of the easiest examples to use, because many “autistic” behaviors are very visual and obvious, but don’t do any harm to anyone. That includes things like hand flapping, spinning, or rocking. Many treatment plans include a goal to decrease these behaviors. Why?

Well there might be a few reasons. If someone is in school it’s true that these things can be distracting to other students. But NOT doing them is distracting to the student with autism. So why do neurotypical needs get prioritized over neurodiverse ones? And some stims aren’t even distracting but are still seen as bad because they make the person look different.

There should be one guiding principle in all treatment: has my client communicated that this behavior is something that makes their life worse? VERY occasionally this comes with the addendum that if a client can’t see that something is harming them you still might need to try to get rid of the behavior, but I can only see that applying in physically dangerous cases like self harm, extreme caloric restriction, purging, drugs, etc.

But the point of therapy isn’t to “cure” people. It’s to make them healthy. Healthy is not the same as normal, and often doesn’t mean living without any kind of mental differences. Healthy means that you can live your life in the manner you like and mostly achieve your goals. It means your life is the way you would like it to be, at least in the really big ways. Most if not all people who deal with any serious neurodivergence do that while also continuing to live with their neurodivergences, because a brain that is wired for anxiety or depression or OCD or a personality disorder doesn’t stop being wired that way. At best a person can hide it.

Hiding the way your brain works and trying to behave in ways that are counter to the way your brain works is painful and unpleasant. So again, let’s go back to the goal. WHY do you want to change a behavior? Is it because differences make you uncomfortable? Is it because you think that it must make the person unhappy? Is it because you think it’s making their life more difficult?

I have two words for you: communication and consent. I think many treatment programs forget to communicate with the client. Because that communication can help you find out why someone is doing something. What purpose does it serve? Do they like it? If so, leave it alone. If not, you still need to help them find a way to serve the same purpose. And if your client doesn’t want to change something then you don’t get to decide for them. Just because someone is neurodivergent or mentally ill does not mean that they cannot make their own choices, or that they don’t have preferences, or that they can’t tell you what upsets them and what doesn’t. Your perception of better or worse is irrelevant.

Being “normal” does not necessarily mean better. What is important is making sure that people are doing things that make them happy, that aren’t held back by their brains, that they aren’t hurting. It’s to give people the best life possible, which does not mean the most neurotypical life possible. It means a life that makes THEM happy.

Now of course for some people sticking out is unpleasant, and if they don’t like being different then by all means it’s no problem for their treatment goals to include looking more normal. But consent is the basis for all of this. Do not try to change someone’s brain without their consent. That’s called manipulation and it’s abusive and cruel and unnecessary.

The end goal isn’t neurotypicality. It’s happiness and fulfillment. It’s a life that someone with neurodivergence likes. What providers miss when they prioritize neurotypicality is that they might be actively hurting someone finds it easier to behave in a different way. If you need to stim and you can’t, it’s uncomfortable and sometimes painful. If you have extreme anxiety and socializing outside of your social circle is intensely anxiety provoking, it makes sense that you’ll want a small, close group of long term friends instead. If those people are forced to behave like “normal” people, they will be less happy and less capable of functioning.

This is why providers need to learn to ask questions more often: what do you want? Why? And then they need to learn to give their clients the time and space to give informed consent to their treatment. Even people who are non verbal. Even people you assume can’t understand. They still deserve the basic respect of having their desires for their life heard. Always. And your assumptions about what makes them happy are not more important than what they actually want, even if that means they’ll look autistic or anxious or delusional for the rest of their lives.

Some Problems With ABA And The Way We Talk About Autistics

Disclaimer: a content warning for nonconsensual treatment. This post represents my views alone and not those of my employer. I am not autistic, but as someone working for an autism organization I am striving to listen to their voices.

As part of working in the autism world, I’ve been spending time reading and learning about various therapies used to treat autism. There is quite a bit of controversy in the autism world about just about everything, but one of the most controversial therapies is called Applied Behavioral Therapy. It is an evidence based therapy that is considered the gold standard by many treatment providers. It is also considered abusive by many people who actually are autistic.

After spending a class delving in depth into ABA, I understand many of the criticisms that autistics bring to the table, and I want to signal boost some of the problems that I saw in the class, things that apply to many of the ways we talk and think about autistics in general, and things that seem as if they could easily be remedied in order to access the positive elements of ABA (because there are some elements of the therapy that rest on solid and respectful principles).

Let’s start with that. The underlying principles of ABA as they have been explained to me rest on the idea that every behavior has a function, and if you believe that a behavior is not helpful to someone, you have to give them another way to fulfill that same function. This seems like a really good principle. If someone is engaging in self injurious behavior, or their life is being impacted by their behavior negatively (they can’t socialize but they’d like to, they can’t get out of the house, they’re having a hard time getting a job and would like one), it makes sense to help them change that behavior. But it’s also incredibly important to make sure the person isn’t left without their coping mechanisms entirely and has support to fulfill their emotional, physical, and social needs.

Unfortunately that principle appears to get lost really often.

What also gets lost is that any time someone is being treated for anything they need to be an active part of their treatment. Whether they are verbal or not, “high functioning” or not, they need to have some way to communicate their consent and acceptance of the treatment. I actually heard an ABA practitioner say that you might be working with people who “aren’t capable of consenting.” I don’t think it’s possible for me to state NO to this sentiment strongly enough. Consent is not something that is exclusively verbal. It happens in all kinds of ways. It is very, very obvious when non verbal folks don’t consent to treatment, and if you think you’re allowed to continue a treatment after your client has had a meltdown, started crying, started screaming, tried to run away, or tried to hurt you, then you clearly have no respect for the way that your client is withdrawing consent.

What really frustrates me about ABA is that it doesn’t seem to consider the person whose behavior is being modified an equal and active participant, nor does it recognize that they are the expert on their mind and life. It doesn’t take advantage of their knowledge base and attempts to bypass that really important source of information in the process.

In one class that I was in, the presenter spent three hours discussing ABA and behaviors, and only at the end of the session did they mention you could ask someone what they were trying to communicate with their behavior or what they might want to do. One story they told included the fact that they had never just simply asked their client to change the behavior, and instead had tried to motivate the person in all sorts of behavioral ways without making it clear to the person what they wanted and why.

Even when we are talking about behaviors, we have to remember that a part of human behavior is communication. Sometimes that is verbal and sometimes it comes in the form of behavior, but we can communicate with other human beings. Writing off the importance of that communication for helping us understand the behaviors of autistics is a way to continue othering people who are neurodivergent, and for us to ignore what they want and need.

This leads me into the next point: people with autism are people. Just like any other person, they will have preferences. Sometimes there isn’t any deep, important, mental illness scarred reason for liking one way over another. If you get preferences so do they. That means when they tell you “I don’t like this,” you respect their preferences. Unless there is a serious reason that their preference needs to be overruled (e.g. they will only ever eat pizza and it is causing a serious health concern), then there’s no reason to ignore their preferences. Don’t tell me you can’t tell if they’re communicating preferences to you. You know what non verbal communication looks like. You can figure it out. People with autism communicate and it’s not something to be ignored.

What really gets my goat about the way neurotypicals talk about people with autism is that they act as if someone with autism would never have preferences about their treatment, or about the things they find helpful or not helpful. There always has to be some underlying REASON, like “I’m not a visual thinker” or “I had a bad experience with it,” instead of it simply not resonating. One example that I heard of this was when someone asked why one person might not like the 5 point scale, or why it might not work for them when it worked for someone else. The instructor’s response was that they might have had a bad experience with it in the past.

Think about that. If two people are taught the same skill in school and one of them finds it helpful and the other doesn’t, do we assume that it’s because one of them had a bad history with it? No. We probably assume that people are different and sometimes one method of learning is helpful to one person but not helpful to another person. It doesn’t mean there’s something wrong with the method or with the person, just that they don’t mesh.

People with autism get preferences. Most especially they get preferences when it comes to their treatment. It is really hard for me to fathom how a treatment system that rests on the concept of reinforcing positive behaviors does not focus at all on communicating with the individual to understand their preferences, desires, and aims. How can you use positive reinforcement if you don’t know what the person wants?

At this point I don’t know if ABA can fix the problems that so many autistics have talked about, or escape the allegations of abuse. What I do know is that for treatment of autism to move forward in a positive way it has to do so with the full consent of the people getting the treatment. If that means our first priority is researching how to community, then so be it. Autistics already have ways of communicating. As providers are so fond of saying, every behavior is communication. Why are we so bad at listening then?

ETA: Thanks to Benny Vimes for pointing out that another huge problem with ABA is that it’s often used to push autistics to behave in less autistic fashions, e.g. making eye contact or reducing hand flapping. I will probably write further about this in another post, but hand in hand with the idea of consent is the idea that there needs to be a reason to treat someone. There is NO reason to change a behavior if the person who is doing it doesn’t want to change, unless they are actually literally hurting themselves right now. There is NO reason to force allisticness on someone who doesn’t want it.

Creating a Sensory Diet: Lessons from Autism

After my recent post about similarities between ASD and BPD (so many acronyms), I’ve started to wonder about the usefulness of making these comparisons. Sure, it’s interesting to speculate and helpful to see the ways that people are similar, as well as understand where diagnoses can go wrong, but as a total layperson my contributions might have to be a little smaller than all that.

So here’s what I’m going to do for myself, as well as some suggestions for how other folks can learn from the parallels between borderline and autism.

I am a highly sensitive person. I don’t mean emotionally, although that’s also true, but I’m talking about physical senses. I love roller coasters, climbing, and other moving fast/adrenaline style adventures. I’m highly light sensitive and averse. I have lots of issues with textures (this is why I don’t eat tofu). Most perfumes and scents make me sneeze. I hardly have it as bad as some people, but I’m definitely on the “strong senses” end of the spectrum.

It’s extremely common for kids on the spectrum to have sensory difficulties, whether extreme sensitivity or under sensitivity or a mix of the two in various senses. And since it’s so common for those with autism, one of the more common elements of treatment is a sensory diet, or another way to help a kid or adult regulate and organize their sensory experience.

So what I’m going to try to do for myself is create a sensory diet. Once again, I’m finding that the curb cut effect is in full force. Sensory diets are probably great for just about anyone who finds that they’re not getting sensory needs met. I’m not diagnosable, but I definitely need more movement, tactile input, and help with my internal regulation (hunger, temp). After looking at some of the resources for folks with autism, I found a starting list that sounds like it will be helpful to me:

-emotion cards

-notebook and pen

-fidgets

-fuzzy socks

-candles

-be a burrito

-climbing/monkey bars/proprioception

-hammock or rocking chair

-be upside down

-piano

-go outside: water sounds

-exercise

-swimming!

That’s just for a start, but you get the idea. The bonus? I’m also using these sensory regulation tools for self soothing when my anxiety starts to go off the rails. I find it incredibly helpful to focus on very concrete, very basic things like the senses when I’m trying to combat anxiety. I can argue with just about anything else, but sensory input gets to the heart of the matter. So instead of making a self soothing box with affirmations or art work, which has never felt useful to me, I’m creating a sensory box with soft things and fidget and reminders of how to move my body effectively.

 As a side note, I would like to invite anyone with autism to let me know if this is appropriative at all, but my understanding of neurodiversity and its tenets is that stimming/sensory needs/other things autistics speak out about are often needed by lots of people, and the more we can integrate them into society at large the better.

On the flip side, I also think there are elements of the most common BPD therapy, DBT, that could be incredibly helpful to those who struggle to communicate or identify feelings, those who don’t find socializing super easy, or those who aren’t great at self soothing. DBT gives strategies like concrete and easy steps to set a boundary, and encourages patients to identify their values and needs. It suggests that people think about how physically different emotions feel to them so that they can use the physical reactions of their body to identify and communicate an emotion when it’s happening. It suggest methods to combat black and white thinking, like making pro and con lists, or writing out/reviewing facts about what is happening. While some of these things might require adaptation for people with autism, they could enrich that therapeutic experience.

Of course it makes sense for treatments to be individualized based on the diagnosis present, but I always wonder why there isn’t more cross pollination between diagnoses. Some of the techniques used for feeding therapies could be useful for eating disorders, DBT is useful for bipolar and eating disorders, autism treatments might be helpful for lots of people who feel quickly overwhelmed. I would love to see more communication between communities within the larger mental illness umbrella.

Is “Functioning” A Useful Mental Health Framework?

One of the sets of terms that gets thrown around a lot in therapy and psychology circles is high functioning vs. low functioning. I’ve seen it most often when referring to people with autism, but it gets used in many contexts. High functioning individuals with mental illness are usually considered those who can hold down relationships, a job, look presentable, and live independently. Low functioning individuals are defined as those who need help with basic tasks.

There are a lot of problems with this terminology, many of which Leah Harris identifies at Mad in America. It tends to divide people into absolute groups rather than recognizing that people have strengths and weaknesses, it doesn’t allow for change, it can easily set apart high functioning (and not worthy of treatment) from low functioning (and not competent to advocate for themselves or have voices that we hear). More often than not the definition of functioning is related to capitalism: can you work and contribute to a capitalistic society?

“Functioning” terminology does a lot of disservices to people with mental illnesses and leaves a lot of people who have mental illnesses stuck on the outside of conversations about treatment and policy. But it has a pretty strong pull for a lot of people. It makes an intuitive kind of sense. Some people seem to be getting through life better than other people in terms of their relationships, their distress, their overall levels of happiness. Shouldn’t we be able to talk about that? Shouldn’t we be able to talk about the fact that some people need more support than other people?

Yes and no. Functioning can mean a lot of things depending upon what it is the aim is. If the aim is functioning within typical societal structures and capitalistic expectations, then the functioning model is deeply unhelpful. But what might be helpful is understanding that mental illness can deeply impact an individual’s ability to function as they would like. It can keep them from reaching their own goals, or pull them into behaviors that violate their values. One of the framings that DBT provides is the idea of effectiveness: will your action be effective at helping you reach your goals and bringing your life more in line with what you imagine you’d like it to be?

Functioning can run parallel to that in many ways. And this points to a larger problem with how our society conceives of the purpose of people. Society tends to see people as cogs in the larger machine rather than individuals who have different goals and wants. There is no singular good life, which means that there is no single way to function correctly. Even more than that, people are considered to be functional or non functional rather than societies. Individuals are not the only ones who can and should make adjustments to reach a better level of functioning.

Neurodiversity has been positioned as an alternative to the model of functioning by some people, but I don’t think that the two have to be diametrically opposed if we reframe what it is that an individual is functional at. Neurodiversity allows for a variety of paths and goals, and measuring functionality within that framework allows us to talk about how much support an individual might need or how far along a road to recovery they might be without silencing anyone.

I’d like for us to reconsider our aims when it comes to treatment of mental illness. Is it to create people who can fit into the society that we already have without rocking the boat, or is it to help individuals be satisfied with their lives and live in ways that are fulfilling to them? I vote for the latter.

 

Go To Your Box: Using The Tools Available

Earlier today I started to feel a little stressed out during a meeting. Chest tight, fluttery heart, slightly nauseous. All the classic signs. So I took a deep breath and quietly imagined a little girl with a tape recorder (she looks a bit like the featured pic here). She was yelling at me. I quieted her down, then pointed her at a playground and told her that she should go play and she could record all the things she needed to tell me. We’d listen to them later. She ran off happily.

Then I pulled myself back to my meeting and continued on about my life, anxiety dying down.

Ok, that’s a weird story, but here’s the point: if someone had suggested trying this to me a year ago, I probably would have thrown up in my mouth a little bit because it sounds so stupid. But there’s a reason for everything in the image. The reason that my anxiety is a five year old is because that’s about the earliest I remember the anxiety, that’s the level of complexity that exists in my anxiety, that’s about the level of noise and obnoxiousness that my anxiety is: a five year old who won’t shut up. So I gave her a tape recorder so she’d feel listened to and so she knows that I’ll hear her concerns at some point. And I send her to a playground so that she’ll feel safe. Anxiety has too much energy to go to most of my calming places, so I send her somewhere in which it feels like that part of my mind still gets to move and run and yell, but I just don’t have to listen.

And as bizarre as it is, it does actually help to calm me down. Last night I came up with this scenario and one for guilt. Unlike anxiety, guilt looks a bit like this:

 

He’s quite insistent and doesn’t shut up. He sits on my keyboard when I try to write and sticks his butt in my face when I try to read. So I made him a box with a towel in it and so now he can be more like this:

 (credit: breakingcatnews)

And while all of this is a little bizarre and a little silly, the point is that it works, even if just a little bit. It changes my perspective on the emotion. It lets me look at what that emotion does for me and whether or not that thing is actually useful right now or not. It jolts me a bit out of the spiral place. And so when I remember to do it, I will do it. I don’t care if it’s stupid or if there’s no evidence behind it. If I can personally feel my anxiety diminish after trying to do this, then I’ll keep doing it.

Cause here’s the secret: if telling my brain-guilt cat to go back to its box will have an effect, then that’s a tool. If building a playground in my brain as a safe space for my anxiety to run in circles for a while helps my breathing even out, then it’s a tool. Anything that I can do to manage my emotions that doesn’t involve hurting myself or someone else or making situations worse is a tool. And the biggest secret of recovery? Take every tool you can get. Regardless of the bizareness.

I mean sure, don’t just take any treatment you can get. Research your therapist. But if you notice that you feel better when you blow bubbles then go to Target and buy out the god damn bubble aisle, because you take the tools you can get.

Maybe it’s just exhaustion talking because I’ve been in the treatment game for almost 4 years now, but I think it’s an important insight to remember that your tools don’t have to fit with some sort of value-laden or coolness factor image. You get to make your life easier and better however damn well works for you. It might be weird, it might be trite, it might be woo woo hippie crap. I don’t care. As long as it’s a tool that is effective for you then use it.

This might be a lesson you have to learn through experience, but I hope if anyone out there is at the beginning of a treatment journey, they can realize that that weird tic they have that makes them feel better is a totally acceptable coping mechanism. I hope the communities around mental illness can start to proliferate tools and offer everyone anyone tools they might need, because they’re hard to come by and shouldn’t be passed up.

Treating Depression Is Not Medicalizing Sadness

One of the criticisms I often see leveled at therapy and medication is that it’s turning basic human emotion into an illness. There was a huge outcry of this when the DSM V took out the grief clause from the diagnosis of depression (previously one could not be diagnosed with depression 6 months after a major loss), people often throw this at ADD, and in this otherwise lovely article about chronic depression, one psychiatrist refers to diagnoses like dysthymia as follows: “The ‘thymias’ which the DSMs discover – cyclothymia, dysthymia – are helpful for private practitioners in the States. They provide another disorder to be diagnosed, treated and billed for.” The author follows this up with “We’ve reached a point where if you are not actively experiencing ‘happiness’ then you feel you are ill. And if your friends and family think you aren’t happy enough or making them happy enough, they advise a trip to the doctor. “

Now don’t get me wrong, I do think there are many ways that our society fetishizes happiness. Many people find ways to run away from any negative emotions, and those who do act down or angry or sad are generally encouraged to do whatever they can to change that. Those of us with fairly pessimistic temperaments are accused of self-sabotage, of choosing a bad attitude, of being debbie downers. No one really much wants to be around us and we are informed in no uncertain terms of that fact.

But where I do want to differ from these criticisms is that they seem to equate the treatment of depression, even low level depression, with our society’s inability to handle negative emotions. These are two very different things. There’s an odd perception from those who haven’t actually experienced therapy that it’s about getting rid of all the bad feelings and that the end goal is to create someone who is happy clappy skippy doo. At the very least, people who go to therapy are supposed to come out “well adjusted” which for some reason is often associated with a Stepfordish oddness or calmness. We imagine Chris Traeger bouncing around like a hyperactive puppy when we think of those who have overcome depression.

 (not me)

In reality, this is exactly the opposite of the experience that I have had with therapy, and I suspect that many other people have had to delve into some extremely unpleasant emotions as a result of therapy. One of the main elements of therapy for me has been learning that negative emotions are necessary, provide information, and can be tolerated. I have learned tools to be able to feel bad and not immediately spring to fix whatever is wrong (which oftentimes is nothing).  My therapists have repeatedly told me that they want to find the appropriate place for all of the elements that make me up, including such winners as ennui, existential angst, and an overactive sense of guilt.

Here’s the clear and defining line between depression and normal, healthy sadness: depression affects your ability to function in your life. Whether that’s because it’s major depressive disorder and you have reached a point where you can’t shower in the mornings or whether that’s because it’s pervasive depressive disorder and you’ve felt low level emptiness your entire life and you just can’t handle it anymore, what makes something a problem is when it starts to interfere with someone’s life in a negative way. Now this isn’t as clear and defining of a line as we would like, but there it is and most individuals would be able to tell you if they feel like their emotions are getting in the way of their life.

Treating depression, whether with medication or with therapy, is about allowing an individual to function again. A functional human being feels painful feelings sometimes. One of the most obvious examples of the ways in which treatment of depression is actually antithetical to happiness obsessions is in mindfulness practices, particularly DBT. These ask an individual to simply notice their feelings without judgment, letting them happen without trying to change them.

One of the many reasons that people often end up in therapy or on medication is because they have been too afraid to honestly look at their negative emotions, feel them, and let them go. Of course there are some therapists and clinics that may go too far and end up treating any negative emotions as problematic, but overall the profession’s aim is to help people who are struggling.

The other piece of the puzzle is medication, which many people view as a “quick fix” for those who refuse to deal with their problems and just want to be happy all the time. Now I haven’t been on every medication ever so I can’t speak to all experiences, but that really is not how medication works most of the time. I have never had medication actually lift my mood, it simply has held back some of the negative so that I have space to work towards positive for myself. It allows me to go about my daily life in a relatively normal manner so that I can find ways to be effective long term. Again, it’s about keeping depression from drastically impacting my life.

Perhaps the reason that so many people point towards the prevalence of therapy and medication in our society as evidence that we refuse to be happy is because of a basic misunderstanding of what those treatments do. If someone’s emotions are keeping them from achieving their goals in life, from having relationships, from effectively doing their jobs, then the aim of treating those emotions is to help that person live their life. That doesn’t require happiness, but it does require the ability to cope with negative emotions.

I do think that it’s important to address our societal phobia of sadness, grief, and pain. But the way to do that is not to throw the mentally ill under the bus by implying they are running from their negative emotions when they seek out treatment. A diagnosis of depression does not say “this person is too sad”. It says “this person can’t function the way they would like to because their emotions are consistently out of control”. There is a world of difference between those two statements.

Ok, maybe I’m a little bit Chris Traeger.

Revitalization: Shifting Perspectives in Dance

It has been a fabulous weekend. I don’t often say that, but I really do feel as if this is how life should be. It was Midwest Lindyfest, a weekend of dancing. I’ve had bad experiences with too much dancing and lessons and stress and emotions in the past, so this year I chose not to buy a full pass and just went to a couple of the evening dances.

Having the pressure off utterly revitalized my dancing, and I feel like I’ve been completely reminded why I dance at all, and in particular I can see why I want to put more energy, time, and dedication into dancing in the future. This switch in perspective has been a long time coming: I’ve struggled with feeling good about dancing and with incorporating it into my life in the past. But as I’ve gotten further in my treatment for depression and my eating disorder, I’ve started to feel things change. There are some essentials about the way that I approach dancing that have shifted.

Part of this is obvious and easy: I have more energy, I have more coordination, I have more focus, I have more confidence. All of these things will make dancing easier and different. Just like any major change in diet and mood, getting treatment for my mental health and making adjustments in my life has impact most areas of my life. But some of the dances that I had this weekend really helped me finalize a different kind of shift, one that gets more to the core of how I approach dancing rather than simply my abilities.

For quite some time, dancing was an escape for me. Following was a very easy way for me to let someone else take control of my body, to not truly inhabit it, to let that space between self and physicality grow. I suspect that there are many people out there (particularly women) who look for ways to distance themselves from their bodies. One of the major things that has shifted in my self perception has been my ability and desire to be present in my own body. The impact on my dancing is amazing.

I feel like a person again instead of a body that’s being manipulated from afar. Now that my mind and body have connected again, my dancing is utterly different. I believe it’s better, because I think that the best thing about dancing is being really present with another person and with yourself. This ability to be present and mindful has helped me in ways I didn’t even think it would, one of which is to seriously improve my basics.

It’s easy to interpret “being present” as something abstract and spiritual and utterly unhelpful. But there is a hugely physical component to it: feeling where your weight is, holding yourself steady and balanced, being settled in your body without unnecessary tension, understanding how you fit into space. These things are the building blocks of dancing. If you don’t take the time to know your own body, how on earth can you move it effectively? Another part of this is the ability to trust my body. I have had a…stormy relationship with my body for quite some time. There were a few dances this weekend that were so fun that I just let myself go a bit and stopped trying to control everything. I found that most of the time my feet ended up under me and sometimes my “I almost fell down” turned into “wow that actually looked and felt cool”. It’s an amazing realization that my body may actually know what it’s doing.

There is something of a contradiction in this realization though, because in large part it has involved paying less attention to my body. For much of my dance career I spent a lot of time wondering and worrying about how I looked and what my body was doing and whether it felt right for the other person. This was unhelpful. I second guessed everything, I was self-conscious, I was always trying to catch glimpses of myself in the mirror to ensure that I didn’t like stupid (and usually felt that I did anyway). Those dances recently that have helped me to stop paying attention to how I look and start paying attention to what I feel have left me thoroughly convinced that thinking about my body too much is a sure way to guarantee that I will look worse and not connect as well to my body (and if I can’t connect with my own body how on earth am I supposed to connect with someone else?).

Another piece of this realization were the moments that leads really gave me space to express myself. Now normally this freaks me out and I freeze up. I compare myself to how others insert themselves into the dance, I compare myself to the abilities of others. I do this all the time really. When I’m not dancing, I’m watching others and finding myself wanting. But during a few of these moments of time for myself in dance, I found that thinking not about comparison or myself means that I get to think about my way of doing things. It probably doesn’t look quite like anyone else’s, it might even look weird. But if I explore all the ways that my body moves, I will find a whole variety of fun things I can do in my dancing.

I still have a lot of jealousy. That probably won’t ever go away. I still feel sad that I will never reach the level of many of my friends and fellow dancers. But it isn’t consuming anymore because I have had those few dances where I brought something to the table and so I know that by being myself I can contribute something unlike anyone else. This is true for everyone who dances: none of us dances the same, none of us moves the same, each of us will bring something to the dance floor. The recognition that I am utterly unique in my dancing is quite a good reminder that I don’t need to live up to other people, just myself.

Another kind of amazing thing that I did this weekend was remember names. Usually I’m shit at names. There’s at least one person that I’ve danced with for at least a year whose name I only now can remember (I swear I tried). But this is indicative of a bigger shift: a shift from self focus to other focus. Depression is self-centered, just like unhappiness and eating disorders and negativity. It’s easy for people to slip into thinking about themselves and their own needs and feelings. But I was legitimately interested in other people this week. So I remembered them. I talked more. I smiled more. I laughed more. This often leads to more goofy/fun moves because it means you can amplify what your lead is doing in fun ways. It is a complete change in perspective that utterly revitalizes my dancing. It makes me excited to ask someone to dance rather than nervous and uncertain. It’s like every person out there is an entire world unto themselves and when I dance with them I get to experience a little piece of it. Yum.

Dancing feels good again. I can feel confident. I can feel like it doesn’t matter who I walk up to and dance, I’m in control of whether I have an enjoyable dance or not (with the exception of leads who yank and hurt and creep). It isn’t exactly about choosing your attitude, but it’s about choosing your actions and choosing your reactions to things. It’s the ability to see other people again, which is joyful, especially in the context of dance.

And the best thing about this is that it’s partially the result of some really damned hard work on my part, but partially simply a result of dancing with people who are giving. It’s the moments where something goes wrong and one person goes with it and it turns into the best moment of the dance. It’s the sproingy feeling at the end of a swingout. It’s a really juicy hip swivel. It’s finding yourself at the end of a swingout hitting a pose right with your partner (not quite knowing how you got there but knowing it’s right). I may be an introvert, but these moments of communication and togetherness and energy and joy are what I want in my socializing. They’re what I want in my life.

It feels really good to be reminded why you love something, and to figure out that it will just keep getting better.

An Open Letter to a Struggling Friend

Hey you.

It looks like things aren’t going so well right now. In fact it looks like things suck balls right now. It looks like you’re terrified and hurting, and you don’t know how to let people help without giving up who you are and all your coping mechanisms.

Trust me, I understand. I understand what it’s like to know, deep down in your gut, that what you’re doing is right and that everyone else should piss right off because they don’t get it. I understand what it’s like to know that you can’t get through a day without doing those things that everyone else says are “bad” and “dangerous” and “self-destructive”, but you know that you wouldn’t even be alive right now if you couldn’t use them to cope.

I also know what it feels like to not want to be alive anymore. I don’t have any trite words of wisdom about how it gets better. Some days I’m still not convinced that I make the right decision by choosing life over and over again. Life is exhausting and thankless, and seems to be a hamster wheel of attempts at happiness. I don’t know what we get out of it, and I don’t know whether it’s worth it. What I do know is that I care about not hurting people, about being a compassionate, decent human being. I know you do too. And I know for a fact that hurting yourself will hurt many, many other people. Not a small, insignificant hurt either. The kind of hurt that lasts and lingers and comes out of nowhere when you least expect it.

You know that kind of hurt.

I know it comes across as unfair and guilting when other people ask you to be healthy for their sake. They don’t know how hard it is. You’re not doing anything to them. You have the right to your own life, and they need to get over it. You’re doing what you need to do to get by, so screw everyone else who wants to change that. Why is it your responsibility to take care of everyone else’s god damned emotions?

It isn’t fair. In no way is it fair. However it is also the reality of the situation that your actions affect others, and if you want to be consistent with your values you have to start taking care of yourself. You also have to start listening. I know that you are a strong, brazen individual who doesn’t give a fuck…except that you do. You give so many fucks and that’s why it hurts so bad when others are hurting. That’s why you have to poke and poke at the people who want to hurt you, that’s why you want to prove you’re stronger than it all, that’s why you want to look stone-faced. It couldn’t possibly get any worse, could it? Maybe it will get bad enough this time that you won’t have to keep going, you’ll be able to give up.

That doesn’t work. I have tried nearly every trick in the book to turn off the feelings. They keep coming back. Always.

And you and I have something in common that means you will never give up. We have a special kind of stubborn streak. You may be the only other person I’ve met who has one quite like mine. It’s the kind of stubborn streak that means we never leave things half-assed, including our own lives. Oftentimes it leads to problems. But this is one of those times where the stubborn can be used to your benefit. You will hold on to your bad patterns with the strength of Superman, but you will also hold on to life because change is terrifying and you’re used to being alive. Relish that stubbornness. Relish the fact that you’ll survive just to prove that you fucking can and you’ll be fine without any help thanks very much.

Except of course that you won’t be fine without any help.

There are people who are telling you that they love you and that they want to help. That’s not what you want to hear. You want to hear that they’ll leave you alone because you don’t even know what help looks like and you don’t know how things could possibly get any better (because they always seem to find a way to get worse). Somehow it doesn’t hit that these people really might have a perspective that you can learn from. How on earth would they know better than you about your life? They think they care about you and they think they love you, but if they knew who you really were they wouldn’t? They’re lying, it’s a trap, it’s a trick, they’re condescending fucks.

Or that’s what you tell yourself.

In reality, you cannot understand how terrified and in love your friends are. You will never understand what you mean to them. You will never understand how badly it hurts them when you lash out, when you tell them that you know they hate you. You think that you have to be the one to manage them all, to keep them in line. You have to come up with the magic bullet that will fix all your problems and they’ll stand there and smile nicely and maybe lend a hand, but they don’t know what’s going on and so they can’t help.

Except that each of your friends has an entire lifetime of coping behind them. The feeling of finally being able to fall into their arms and give it all up is amazing. They might not know exactly what to do, but a little bit of trust goes a long way: they probably know how to help a lot better than you think they do. They are willing to put up with so much more than you think they are.

Imagine, briefly, that one of us was far away and hurting. Imagine that we were cutting off contact, instigating fights, hurting ourself. Imagine what you would do to get to us, to save us, to make god damn certain that we were ok. Imagine how badly you would want to fold us in your arms and get us to a doctor and shut out the rest of the stupid world until we were safe.

And I get that it feels like we want to control you, and I get that it feels like you’re a damned adult and you can handle yourself, and I get that this all feels like a stupid overreaction and you don’t want it. But you know what being an adult means? It means taking responsibility for your relationships. It means being willing to do shit that is hard and terrifying and unpleasant. It means being willing to talk to your friends and listen when they say they’re worried and do silly, potentially useless things to help calm their fears.

Because really, how would it hurt to let them in? Besides the overwhelming fear of rejection (which you’ve already forced by pushing them away), what would happen? You’d have to stop doing all the things that rip your body apart and leave you broken but in control (or so you tell yourself). You’d have to stop holding so damn tightly to all the little things in your life that are making you feel human.

So yeah, it does hurt to let them in. And maybe some of them won’t be able to handle it. And that is a horrible, miserable feeling. But I can promise you that if you don’t let your friends in, none of them will be able to handle it and you’ll be really, truly alone. I can promise that you KNOW it hurts right now. It may very well get worse if you ask for help and you do the damned hard work of learning new ways to cope. In fact it probably will. For a while. It is a thankless task. But when you hear your friends and family saying things like “I never could have said this to you a year ago”, or you notice how much more relaxed they are around you, or how you haven’t felt like you have to hide or lie in weeks…somehow it’s a little bit worth it.

I’m not going to tell you it will all get better. There are no rainbows and unicorns. But you can get better. You can do better. And I expect better of you. I know that you’re hurting, but that doesn’t give you license to treat your friends the way you have. So please, stand up and be the version of yourself that is vulnerable, open, and compassionate, to yourself and to others.

I love you more than you can imagine.

Olivia

The Role of Exercise in Eating Disorder Recovery

For people with depression, anxiety, or really any form of mental illness, a common refrain from well-meaning friends and acquaintances is often “well just exercise. That will help you feel better”. It’s true that there is good evidence that regular exercise can improve mental health (although there are many problems with simply prescribing exercise). However trying to incorporate exercise into a recovery and treatment regime becomes infinitely more complex in the context of an eating disorder. Over exercise is often a symptom of eating disorders, and for many people trying to recover it’s also a trigger for other self-destructive behaviors.

Because exercise is an important element both in healthy weight maintenance and improving mental health, but is also a triggering and potentially dangerous activity for someone with a history of overexercise, people in treatment for eating disorders must walk a delicate tight rope when it comes to their exercise regimes. This has been a particular struggle for me, and I’ve been looking for ways to bring exercise into my treatment in a positive fashion.

There are a few techniques that I’ve had some success with, but if anyone has more suggestions, please share in the comments. The first way that I’ve found to improve my relationship with exercise is to stop using the word exercise to refer to movement. This opens the way for all kinds of “exercise” that don’t involve going to the gym and using equipment that loudly announces your calories burned to you every time you look down. I swing dance and I rock climb and sometimes I just throw dance parties in my room and sometimes I try to just go for walks or have squirt gun fights with my friends. The more that I can find things that I enjoy which also happen peripherally to involve movement, the better.

The reason I try to use this technique is because the moment my brain is convinced that I am “exercising”, it becomes convinced that I need to hit certain markers of acceptability: burn a certain number of calories, exercise for a certain period of time, stick to a certain regime. If I don’t use the label “exercise” to describe what I’m doing, but rather focus on “fun activity, preferably with friends”, I get a lot more mileage out of the activity and don’t fall into a negative spiral that tells me I am not acceptably fit. Looking for activities that fit this mold also lets me double dip on my activities: not only do I exercise but I also find some depression fighting positive activities, and potentially social time as well.

Something else that has worked well for me is to accept that sometimes a complete break from exercise is necessary. I find exercise extremely helpful with anxiety and don’t like leaving it entirely behind (especially as I’ve been pretty active my whole life). However when I’m compulsively exercising every day, it can be much harder to try to slowly lower the amount of exercise that I’m doing while still doing some. In many ways it’s easier to simply say that I can’t be responsible about my exercising at this moment in time and I need to take some time off. This has the added benefit of giving me LOTS of extra time to do other positive things with my day.

There are a lot of ways that cutting exercise out of  your life for a time can backfire. How do you deal with all the anxiety you worked off before? How do you accept loss of muscle mass or increase in fat? How and when do you begin to add exercise back in without swinging immediately into over exercise mode again? Especially if you’re doing this while you’re trying to increase your caloric intake, it can take a serious toll on your emotions and your motivation to continue treatment. Unfortunately, this is one of those places I don’t have the answers: I’m struggling to find ways to begin incorporating exercise again without it becoming unhealthy.

One helpful way to deal with feeling guilty about not exercising or feeling extremely compelled to started exercising again is to find some friends who aren’t big on exercise. This doesn’t mean you have to dump your friends who are extremely fit, but there are people out there who aren’t particularly interested in physical fitness and are perfectly happy with their lives. I am a big proponent of distract until you’re in a healthier place, and finding people who will encourage you to do other types of fun and interesting things, model other versions of healthiness and happiness, and generally not bring up exercise as something you have to do is a great way to build a life that doesn’t circulate around exercise.

The final, and perhaps most difficult thing to do if you’re working on overexercise is to make sure that you’re not paying any money for exercise. What I mean by that is if you’re paying for a gym membership or classes or a personal trainer: stop. I’ve found that when I’m shelling out money I feel obligated to “get my money’s worth”. You can always go to the local rec center and swim some laps or go for a run or a bike ride. But those ongoing expenses are a constant pressure to get to the gym and make it worth it and I’ve found that pressure nearly unbearable.

Of course all of these are just suggestions that I have found helpful, and won’t work for everyone. I’d love to hear other suggestions in comments, especially from those who have found an exercise regime that works for them.

Things That An Eating Disorder Is Not

1.A fear of fatness
2. A diet
3. A choice
4. Stupid
5. Caused by Western media
6. Caused by beauty ideals
7. A new phenomenon
8. Understood
9. Anyone’s fault
10. Incurable
11. Easy
12. Sustainable
13. Irrational
14. A metaphor
15. Internalized fatphobia
16. Prejudiced
17. For white girls
18. A phase
19. Identifiable by size
20. Isolated from family/friends/society
21. Identical to any other eating disorder
22. Useless
23. About anyone else but the sufferer (and potentially close friends/family members whose emotions are deeply enmeshed)
24. For young people
25. For women
26. A ploy for attention
27. Trivial
28. Motivated by someone else’s body
29. Motivated by the sufferer’s body
30. Seriously, not about bodies
31. Isolated from other trauma/emotional issues that the sufferer might have
32. Fun
33. Shallow
34. Simple
35. Definable
36. Caused by any one thing
37. Entirely genetic
38. Entirely socialized
39. Making a statement (except possibly “help!” or “I can’t handle life!”)
40. About you
41. An epidemic
42. Getting more common (hey guess what more awareness does? Leads to more diagnoses!)
43. For you
44. To please men
45. To make women submissive
46. Weakness or powerlessness
47. A problem for you to fix
48. Something you get to define
49. An identity
50. A talking point or pawn for your theories about society
51. Manipulative
52. Blackmail
53. Seriously, still not about you
54. Gender roles taken to the extreme
55. Not really a problem
56. All in your head
57. Solved by “just eating” (or really by eating at all…that’s an important piece but really doesn’t fix the disorder)
58. A lifestyle
59. A fashion choice
60. Limited to anorexia and bulimia
61. Limited by your location, age, gender, race, ethnicity, religion, class, sexuality, education, or really anything else
62. The same as “wishing you were skinnier”
62. The same as weight discrimination
63. The same as skipping lunch that one time
64. Self-control
65. Submitting to patriarchal beauty ideals

Things that an eating disorder is:
1. A potentially deadly disease that is unique to each individual who has it.