Unpacking the Spoons

Most of you have already heard the spoon metaphor by now. It was originally coined to describe what it’s like to have a chronic illness, although since then it has been used to describe mental illness as well. It’s an incredibly helpful tool, but I’d like to take a minute to expand on why those of us who have illness of one kind or another use up our spoons so quickly. There is an invisible aspect to illness that most of us don’t talk about. It’s oddly taboo, particularly for mental illness. Let’s shed some light on it shall we (I’m going to confine this discussion to my particular mental illness because that’s what I have experience with, but I know that this type of thing is applicable to all sorts of different illnesses).

When you’re mentally ill you have to think about more things. Let’s look at some examples of things that I have to think about on a regular basis that most people are blissfully unaware of: (trigger warnings for ED and self harm)

1.Are my hands shaking? Will someone notice? How will I explain it if they do?

2.Will the clothes that I’m wearing expose any of my scars or current cuts? Am I going to be somewhere that I care?

3.Will someone use the word “purge” today? How will I deal with this trigger if it comes up?

4.Will someone talk about my body or eating habits today and how will I quickly escape the situation if that happens?

5.If I eat something, will my stomach be able to keep it down or will it get uppity because it’s not very good at digesting anymore?

6.Will it look suspicious to my family or friends if I go to the bathroom immediately after a meal?

7.If I stay at someone’s house, do I have my meds? I cannot stay at someone’s house unless I have my meds.

8.If others want to do a physical activity, will I be able to keep up? Will I start feeling faint?

9.Did I bleed on my sheets or my pajamas after I cut last night? Can I get that stain out? Did it get on my computer, and will other people notice if I bring my computer out? Also gross.

10.Can I leave the house today without overwhelming self-hatred based on how I look in these clothes?

11.How distracted will I be today by my body? If my thighs rub together while walking, will I still be able to keep it together, or will I start having some really bad thoughts?

12.Will there be calorie counts listed somewhere that I go today?

13.How do I get all my hours in at work and get to 5-10 hours of therapy a week? How do I explain to my boss and coworkers that I’m not lazy it’s just really hard to find good times for appointments?

14.I usually get tired at around 9:00 (probably from nutritional deprivation among other things). Can I go out and socialize tonight? How can I see my friends when I have a full time job and I can’t stay awake past 11?

15.Was that slight chest pain just some anxiety or other minor something, or am I finally getting the irregular heartbeat that is supposed to come with my eating habits?

16.What do I say if people bring up food habits? Fasting? (yes this has happened, e.g. how long have you gone without food). How do I keep myself from blurting out “yeah, I ate once a week for a couple months once”?

17.How much do I tell people?

18.If someone hugs me, will they be able to feel my fat? Will I be ok with it, or will I want to pull away (most of the time it’s pull away. Then I have to be polite)?

19.If I purge, will I smell like puke? Will I be able to get those nasty stains out of my clothes (yes, it gets everywhere. yes it is gross)? What happens if my boyfriend tries to kiss me?

20.How much of my day will I waste thinking about food and debating whether or not to eat and how much to eat? This varies from about 1 hour to my whole day, depending.

21.Sometimes I even waste my brain space wondering if what I expel from my body is the same as what I put into it (yes I am talking about poo).

22.How many layers should I wear? I’m always cold, but I can’t regulate my body temperature at all so I swing to really hot if I’m under blankets or layers.

23.Can I handle looking at myself in the mirror today? Will I look like a complete idiot if I get dressed and leave the house without a quick mirror check?

24.Will someone notice if I start poking at my wrists or my hips to feel the bones? Can I feel my bones? Am I too fat if I can’t feel my bones?

25.Have a fasted/restricted today? How long has it been since I last ate? How much did I eat? If someone tries to give me breakfast, how can I say no?

This was just a list I came up with off the top of my head. Imagine trying to get out of bed while thinking about all these things, plan your day while thinking about all these things, accomplish work while thinking about all these things. THIS is where the spoons go. The reason that doing simple tasks requires so much more energy and effort is not just the physiological difficulties of depression or illness (and yeah, those things often do come with some serious fatigue or pain), but also the fact that everything is inherently more complicated. You are constantly trying to protect yourself from whatever threat your illness brings. You have to plan ahead like nobody’s business. You have to be assessing what’s going on around you and what’s going on internally to make sure you’ll be ok.

With mental illness, many of these thoughts are intrusive, paranoid, and irrational. Unfortunately that doesn’t mean you can turn them off and that doesn’t mean that you’re expending less emotional energy by having them. These thoughts are intrusive, distracting, and oftentimes pervasive, which means you’re taking a lot of your executive function to refocus your brain on the task at hand. All the time. Over and over.

For many of us who are dealing with a low spoon count, we don’t even realize that this is where the spoons are going: all we know is that things feel hard. They feel exhausting. We’re more worn out than other people even when we’re doing what appears to be less. Again, the key appears to be patience with yourself and with others, as well as clear communication about what you’re feeling. Many of us don’t want to speak up about the things that are hard for us, whether because we don’t want to appear weak or because there is a strong taboo against them (most of the things listed above fall into this second category). If we can get better at telling others what we’re really feeling, maybe this whole spoons thing will start making more sense to everyone.

 

“Mental Illness is Not Biological”

I am a big proponent of being careful with language. I don’t think that we should oversimplify something simply because it sounds better or is better marketing. Especially when it comes to mental illness, we are so sloppy with our language as it is that I think we must be careful. I don’t like the idea that we should describe mental illness as “a chemical imbalance” because it deeply oversimplifies things. So I was fairly dismayed when I sat down to read an article in my local paper about the need to talk more about mental illness and it simply repeated over and over “mental illness is not biological” and that we need to spend more time talking about the pharmaceutical industry.

Many people do not pay enough attention to the biological factors of mental illness. Yes, we recognize that genes can cause a predisposition, but more than that, basic biological systems can deeply affect your mental health. A few examples: sleep deprivation can easily cause symptoms of mental illness. It can deeply affect mood, emotional stability, depression, anxiety, and other brain functions. Continual sleep deprivation can spur a mental illness. I’m not sure what one would call that if not a biological factor.

Similarly, food deprivation is deeply correlated with some serious signs of mental illness. In the hunger studies performed at the University of Minnesota, individuals who willingly deprived themselves of food became depressed, anxious, obsessed, violent, withdrawn…they had diagnosable mental illnesses that were not present before the removal of food. Again, this seems to be a strictly biological change that triggered a mental illness.

Factors like these are often heavily discounted when we talk about mental illness, particularly when we’re attempting to recover from mental illness. Not enough time is spent focusing on the fact that if you don’t have a healthy biological basis with adequate sleep, nutrition, and exercise, it is significantly more difficult to have a stable mood and recover from a mental illness.

In addition, we do know that genes play some role in mental illness. We know from twin studies that many mental illnesses are far more likely to occur in an individual if they have close family members with that mental illness. For some mental illnesses, we have identified specific genes that might be linked to that mental illness. The most likely theory about mental illness right now is that we are genetically pre-disposed to an illness (to varying degrees depending upon the person) and social or environmental factors then can trigger that mental illness. And yes, neurotransmitters and brain chemistry are implicated in that mental illness. Yes, there are physical processes that have been disrupted when we are talking about mental illness. No, it’s not just a chemical imbalance, yes it is more complex than that, but of course it’s biological because our brains are a biological organ.

This is intensely frustrating, because it makes it seem as if the social factors that affect our mental health have no bearing on the physical existence of our brain. In fact studies done on chimps have shown that certain brain chemicals are altered over the course of years by trauma or isolation (if a chimp is isolated at a young age they will have different levels of certain brain chemicals when placed in isolating situations than a chimp not isolated at a young age and these effects last for many years). This is a physical change brought on by an environmental factor.

Of course it’s important to be careful not to oversimplify, but obscuring that there clearly is a biological factor to mental illness is not helpful either. In addition, the fear of labeling mental illness as biological plays directly into the fear of overdiagnosing and overprescribing. When we repeat over and over that mental illness is not a biological illness that revolves around neurotransmitters and brain chemicals, we become even more paranoid about prescribing medication (something that people are already worried about in the case of things like ADHD and Xanax). Speaking as someone who takes medication, this is incredibly damaging. Medication can be a complete life-saver: it made my anxiety manageable and so it gave me a window to actually begin dealing with some of my underlying issues. I was afraid to begin taking medication because I didn’t want to “alter my brain”. Repeating the myth that pharmaceutical companies are out to get us all and that medications are not the proper way to treat mental illness reinforces that stigma.

Of course we should include various kinds of therapy when we’re working on mental illness, but it is actually incredibly difficult to get medication for many mental illnesses and particularly difficult to get insurance to cover it. People are already afraid of medication. People are already afraid of being turned into zombies by pills or having unknown side effects. It is possible to advocate for improved standards for pharmaceutical companies AND accept that medication can be an incredibly important part of treating mental illness.

We need to recognize that mental illness is complex, requires a number of kinds of treatments, and involves a variety of factors including the biological, social, environment, genetic, chemical, and situational. While it is important to move past the “chemical imbalance” trope, that doesn’t mean completely removing any mention of chemistry or biology from our descriptions of mental illness.

I’m Worse Than I Used To Be

In my recent internet browsings, I ran across a Facebook status from a friend who suffers from depression. The status was fairly simple. It basically said: “I’m so much worse than I used to be.” This language is in a lot of places. “My depression has gotten worse”, “this is the worst she’s ever been” and so on. But there is an important distinction between saying “my depression is worse” and saying “I am worse”. One of these is helpful and is an assessment of the seriousness and difficulty of a situation. One of them reflects back upon yourself, and can have some negative consequences.

Here’s the thing: when you are in the midst of depression you are not “worse” than you were a year ago or five years ago. Your situation is worse. You however are exhibiting great courage and strength by continuing to get yourself out of bed each morning and struggle through each day. YOU are amazing in the moments that your struggle is the worst.

Let’s imagine a situation in which it is not your brain or your body that is making things difficult for you. Let’s imagine that you’re navigating a wilderness. Things keep trying to kill you, it’s desolate and dark, you don’t know how to get out, and you have little hope of it getting better. You struggle to keep going. You find tricks to make light, to find food, to keep yourself putting one foot in front of the other, moving in the hope that something might change. If someone were to look at you, they would certainly judge your situation as bad, but I seriously doubt they would say that you were doing worse than you had in a cushier circumstance. YOU as a human being are surviving, growing. You may not be flourishing, but you are learning tools to flourish.

Depression is just as difficult a mental landscape as this imagined world. You are navigating. You may not realize how much skill you are navigating with, but you are still alive, you are still moving, you have created your tiny lights to bring you through the day.

But why does it matter? What’s so bad about using this colloquialism?

We all know language is important. We all know that people already feel enough shame around mental illness. Many people struggle to succeed in day to day tasks when they’re in a difficult time with their mental health. It’s easy to feel like you’re “bad” or you used to be “better”. There is no reason to continue to reinforce that message to people, and in fact reminding people of their own power and strength is highly important to recovery. Especially when someone is talking about themselves, they need to remember that their own judgments can cut down their self-esteem and make it even harder for them to recover. Saying ‘things suck right now’ is a way to keep your own value out of it: you’re still kick-ass, but depression sucks.

Each time we reinforce the idea that mentally ill is equivalent to broken, wrong, bad, or inept, we are harming those who suffer from mental illness. It is far too easy to be sloppy about our language when we’re referring to mental health, and too many people already do this. Especially when there are so many fantastic ways of describing how frustrating it is to deal with depression (jerkbrain is laying siege! Release the hounds!), why would we fall back on words that repeat to us that we are not good enough for the world or that we were better when we weren’t sick? Why would we reinforce to ourselves that we have an obligation to get better because we suck so bad now?

Repeat after me fellow sufferers from all forms of jerkbrain: I am not bad. I am no worse than I was before jerkbrain struck. I am striking out into a wilderness that no one before me has braved and I am STILL ALIVE. It is dark and it sucks and I am afraid, but I am STILL ALIVE. I have survived things that the neurotypical cannot imagine, I woke up this morning and I got out of bed and no one can imagine how brave that was. I am a kickass jerkbrain warrior. I am the best I can be.

Gratitude: Mental Illness

It’s Thanksgiving this week, and I’m going to be cliche and talk about gratitude. I’ve unintentionally spent some time earlier this week looking at an experience that I was grateful for, but today is going to be a difficult exercise for me: I want to talk about something in myself that I am grateful for. This isn’t easy, but I suggest all of you try it as a way to see those things in yourself that are good.

I spend a lot of time griping about my mental health, but after a lot of thought, I am grateful that I was born this way. My mind is quite often a bitch to me, but I’m glad that it is the way it is. Despite the fact that my mental health is probably my biggest hurdle in life, it has forced me to become a better person, to learn many things that I otherwise could have easily avoided, and to simply be kinder.

I certainly can’t say that if I was given the chance I’d choose my mental illness, and I’m not saying I enjoy my life the way it is, but if I’m being honest with myself, I’m a better, more selfless, and kinder person because of my mental illness and the places it has taken me.

First and foremost, my  mental illness has required that I spend time with myself. I have spend more hours than most people could imagine delving into my deeper fears and insecurities, ripping apart all the myths and lies that I tell myself, and examining why I do the things I do. I have become a far more facts-based individual due to therapy. I have become better at assessing myself and my situations. Because I’ve simply had to really BE with myself, in an entirely present way, I’ve figured out what I don’t like about myself and made improvements, and because I’ve spent so much of this time with a trained professional, I’ve also started to notice when my perception is a little off.

I’ve also had to spend a lot of time with therapists who are unafraid to criticize me and my coping strategies and who want me to improve my relationships. This means a whole lot of real, honest feedback about who I am and how my behaviors affect other people. Because of this, I often get to think about things I screwed up without falling into a guilt trap and with someone there to help me brainstorm immediate techniques to improve the situation.

While I have spent a lot of time thinking about myself, I have also spent a lot of time thinking about how other people influence me and how I influence others: I have learned to shift the perspective away from me, me, me. Your actions aren’t about me, and my actions are small. I have learned that often I should be thinking about someone else instead of about making myself smaller to fit someone else in.

In addition, I’ve found that I understand emotions better, both my own and other people’s. This makes me far more effective at Not Fucking Shit Up. I’m extremely grateful for that.

I can’t imagine that I would be doing the things I’m doing today if it weren’t for mental illness. I would be locked away reading books somewhere instead. I’m so glad that mental illness has forced me to engage with the world, that it’s led me to my VISTA year, and that it’s demanded of me that I do more for others.

But the thing I’m most grateful for is the compassion I feel I’ve gotten for people whose brains don’t process quite the same as mine. After seeing the confusion and frustration in people’s faces when they try to comprehend what I’m thinking and feeling, I don’t want to be the person that dismisses another’s pain or struggle. While those experiences were horrible, I’m grateful that I think I’m a better person for it.

My mental illness itself has not given me much, but it has forced me into situations that have given me tools to help myself and to help others. I am grateful. I would never have thought so deeply, been nearly as effective, or been so perceptive without the drive of mental illness behind me. I’m grateful that I now have a habit of therapy behind me, that going forward I will now how and where to find appropriate tools to improve myself, and that I will continue to reflect on myself in this way. I’m grateful that when I ask others to go to therapy now, I have the weight of my own work behind me. I’m grateful that I am in a better position to help others now.

So thanks mental illness. You’ve made me a better person.

Strengths and Mental Illness

Lately, our culture seems to be all about optimizing our strengths. At work, we’ve been taking Strengths Finder and analyzing our strengths up the wazoo. We’re often told how we need to play to what we’re best at. While in the past, we were often told to focus most on what we were worst at to bring it up to speed, we’ve had somewhat of a shift to focusing on how your strengths can help you across the board.

While hearing all of these comments about strengths, and how to optimize myself, I found myself somewhat frustrated. It can be hard to imagine excelling at things when it’s a struggle to get out of bed in the morning. In addition, my strengths in Strengths Finders came up as competition, achievement, input, intellection, and learning. Essentially, all of these things at their root have caused me a great deal of heartache and stress. I can’t imagine I would have the mental illnesses I do without them, particularly without competition and achievement. It was hard for me to see how those could be strengths, how they could help me succeed and flourish in life. I was also frustrated at the idea that we should focus on our strengths and not worry about our weaknesses because we would never excel at them. As someone whose weaknesses are not just a nuisance, but are in fact seriously debilitating, this doesn’t seem far practical to me.

So what can someone with a mental illness learn from these strengths based ideas? Can we use them to our advantage? Can mental health treatment benefit from this movement towards strengths?

The first thing that stuck out to me when contemplating strengths is that I spend a lot of time in the mindset of my strengths. Perhaps too much time. When we were discussing them in my office, we mentioned that one could over rely on one’s strengths: focus too much on one way of doing things, and get lost in that. This can be damaging, and actually turn your strength into a weakness of sorts. As an example, let’s look at competition. This strength is about being able to compare yourself to others, to see where you fit in, to see how others are doing things, and to use that comparison as motivation. When you rely overly hard on it, everything becomes a competition, you start to be extremely hard on yourself if you’re not first at everything, and you can become vicious in your attempts to win at all costs. You don’t focus on the larger picture of how competition is helpful, and instead compete simply for competition’s sake. This happens to me quite often. In this case I’m relying way too hard on one strength to get me through, using it as my sole motivator, and I’m not allowing myself to be balanced.

I am used to looking at my competitive nature as a weakness, as something that needs to be fixed. I’m used to seeing it as the source of many of my problems. I’ve been told not to compare myself to others because it will make me miserable. But truth be told, I feel quite lost when I can’t compare myself to others. If I don’t have a benchmark, I’m not sure where I should be. If I don’t know that I’m getting better, I feel a bit lost about myself and my accomplishments. Having this shift to seeing it not as a weakness, but simply as a strength that I need to be more aware of has been incredibly helpful.

Another way to look at this is to circumvent some of your perceived weaknesses. I’m not so good at a lot of the including, social type skills. Social anxiety and me are best buds. This can make my life harder when it comes to things like making phone calls or doing the customer service portion of my job. I’ve spent a lot of time trying to figure out how to get past this social anxiety. However it might be more helpful for me to put my time and effort into projects that come more naturally to me, or to try to approach social engagements as a way to learn something so as to engage the things I do feel good at. I feel good at explaining things to others, so if I view myself as simply a help desk rather than someone trying to make a deep personal connection, I feel far more comfortable.

However despite how helpful focusing on your strengths can be, there are times when weaknesses require your attention (e.g. when you can’t get out of bed in the morning). This can make focusing on your strengths difficult. This might be a time to think about balance, and to think about how strengths and weaknesses are related to the myths that we carry. In DBT, we like to talk about myths. These are things that you are convinced are true, that were probably helpful coping mechanisms at one point, but are not any longer. They include things like “anger is not acceptable”, or “I can’t ask for help”.

Oftentimes, we internalize myths about what our strengths should be, or about how heavily we should rely on our strengths. To go back to competition, I often tell myself that I need to be the best at everything I do. This is a myth. And it means that I obsess over my competition strength. It may even mean that I force myself into it in situations that I don’t want to use it. Perhaps if I didn’t feel the weight of having to be the best at everything all day long hovering over me from the moment I wake up, I’d have a bit more spring in my step upon waking. Thinking about the values that you assign with your strengths can help illuminate some of those myths and help you understand how pulling back on a few of your strengths may help you with some of your weaknesses.

Perhaps mental health treatment focuses too much on what we can’t do and the ways that our brains hurt us, rather than imagining what we do right and asking us to rely on those things. Perhaps spending some time thinking about what we do well can help us find workarounds for the things we don’t like.

My Blog Is a Risk

I’ve recently been applying for jobs, many of them revolving around social media and communications, many of which want to see examples of my previous work. As I’m working to get a job, I’m realizing that the things that I post on this blog absolutely could spell the end of my candidacy at any job to which I apply. Knowing this, I’ve continued to write openly about my mental health, about taboo subjects like self-harm, and about issues that are sensitive and personal. I was asked last night why I keep doing it even though I know that it could harm my job chances in the future.

First and foremost I keep writing about these things because I don’t think I could stop. Whether I did this privately or publicly, I would still be writing and reflecting on all of the issues that I write about here because writing is how I cope, release, and reflect. Writing is just how I express myself. While I”m perfectly capable of having in person discussion and I do enjoy those, my first impulse is always to pick up a pen and paper and let out my thoughts. Writing is what I care about and what I want to do, so I continue to write for my own benefit.

But in addition, there are some reasons that I write publicly about these things. The biggest issue for me is that I don’t want to hide who I am and what I’ve been through. There are a few reasons for this. First, I’ve tried to do that and it feels horrible. It is time consuming, energy draining, unpleasant, and isolating. I don’t like it and I just don’t want to do it. Second, I have found some of the best support and the best discussion from those online. I have found communities that I care about and who care about me. I want to be open with them. Third, I know that there is stigma against mental illness. In my opinion, the only way to reduce this stigma is to make mental illness visible. If people know that their friends, family members, coworkers and the like are mentally ill and coping and successful and relatively normal, they can stop associating mental illness with violence and “otherness”.

Now when I mentioned this to my mom, she asked me why I had to do this. Did I have to fight this battle? Now there is no particular logical reason why I need to fight this battle. However I have known for my whole life that if I can make this world a better place that is something that I want to do, perhaps even something that I need to do. For my own quality of life and for the quality of life of those around me who suffer from similar problems, I can’t help but try to make changes. I don’t want to sit back and let other people dictate the cultural climate around me. I want to be active, and advocate for the things I care about through my own life, and through my activism. While I realize that it’s important to balance my own needs with the needs of the larger community, I know that it is possible to get a job while being open, and I’m willing to deal with the difficulties that posting openly here poses if it means that I can give back in some way.

So visibility is important to me. I am a relatively successful and well-adjusted individual. I want others to see that someone they might view as extremely put together actually has a mental illness. But perhaps most important to me, more than any of these other things, I want to be a voice that other people in similar situations can hear and talk to. If I can help one other individual understand their illness better, be inspired to get help, gain the confidence to talk to me, feel more comforted that they can get better, or find something of help in my posts, then it will be worth it. If I can in any way diminish the suffering of another person, or help someone head off their illness before it gets too serious, then holy shit will I be proud of myself. My potential job prospects are nothing in comparison to what this could do for other people.

From my personal experience, I know that finding others who are struggling, finding others who will be honest and open, and who won’t bullshit about the real reasons they’re trying to get better and why they were struggling in the first place, is the best way to feel stronger and more inspired myself. I don’t pretend that I know I can do this for others, but I can hope. The best way to foster dialogue and to help others feel they can be open and share their experiences is by doing it myself.

So all in all, yes, this blog is a risk. But I feel I can contribute in a very meaningful and intentional way both to my life and to my community by writing openly and frankly about my life. So I’m going to keep doing it.

Disability: Being Broken

Much of the time I feel broken. A fair amount of the time I don’t simply feel that way, I’m told that I’m that way. Not overtly, no, but in the way that people talk about mental illness, the way that people talk about people who don’t have good jobs straight out of college, in the way people talk about women who have experienced any sexual trauma…these things tell me that I’m broken. I once had a friend tell me that he could never be the parent of a disabled child because you would sink your whole life into them and they would still be subpar. As someone who has multiple birth defects and major mental illness, that fucked with me.

I’m told that I need to fix things about myself. I need to be less judgmental and more accepting. I need to stop reacting so quickly and harshly to things. I need to make my anxiety go away, and make my depression go away. I need to change how I feel about the world and myself, change how I perceive everything in order to be “happier”. I’m told that I need to change myself, fix myself, retrain my brain so that it’s different from what it is now and so that I behave differently in order to be whole and acceptable. I have been bribed and threatened by people who are well-meaning to get me into therapy to “fix” me.

And I now work in an autism program. And I hear the same kind of language. I’ve been reading blogs about autism and hearing about the ways that children are asked to ignore their own perceptions, feelings, and understandings so as to act in a way that is acceptable to others. I have begun to understand that in many ways, people to help those with autism still view autism as a disease that infects someone, a broken piece of their child that needs to be banished so they can have the real child back.

That’s how I feel when I talk about my eating disorder. People have literally told me to view the disorder as something separate from me, almost like it’s possessing me, like it’s broken and if I can just fight it away then I will be back and the disease will be gone. I’ve been broken or taken over by this bad thing, but if I could just get past it, throw it away, change it, then I would be normal and ok again.

Except that that’s not how mental illness or disability works. The way someone who is autistic views the world isn’t broken: it’s different. What is broken is the way that we treat those who see things differently or act differently. We expect them to move 99% of the way towards what we view as normal so that we can be comfortable, and then we make a 1% accommodation to adjust to them. We don’t allow that some people might be far more happy if they were allowed to act and think in a way that is radically different from the way we do.

As an example, I will always be more comfortable thinking in terms of my own safety and trying to avoid things that will be triggering for me: I will probably never be able to spend much time in a kitchen making food on my own. I will never cook for others. I will always feel more comfortable if others will simply accept what I say about my disorder and don’t question my experience. I will always feel more comfortable if I can move my hands when I’m anxious, or if I can twitch a body part when I have too much energy. Asking me to stop that doesn’t make my anxiety go away: it simply gives me no way to deal with it.

To take a more extreme example, for a lot of kids with autism, they have extreme sensory sensitivities. They can hear or feel things you or I never could. So they may never feel comfortable being in crowded or noisy places. And that doesn’t mean their broken. It doesn’t mean we should force them to deal with those situations. It means that we should accept what they can deal with, accept how they perceive as legitimate.

Instead of asking those of us who might perceive or experience the world differently from you to force ourselves into mental contortions so that we can look and act the way you might expect, maybe people should consider that we’re not broken. There is absolutely nothing broken about the fact that my brain likes to organize things A LOT, and thus it tends towards black and white thinking. There are useful elements to this and unhelpful elements to it. Telling me that it’s wrong will not make it go away, and even if I COULD stop acting in a black and white fashion it wouldn’t necessarily make me happier.

Making adjustments so that I can have time to think before jumping to black and white thinking, or encouraging me to rely on it in areas where categorization is useful but giving me some other tools to check it in my personal life: THOSE are helpful. They don’t try to fix me. They don’t tell me I’m broken or wrong in any way or that if I could just be more like other people or adjust my thoughts and my life everything would be ok. They do tell me that since I function differently than a lot of people I might need some help fitting myself and my perceptions into the larger scheme of things. Society is set up for the “norm”. It’s not set up for me. Which means I need some help getting myself to fit into the way society works. I need help functioning sometimes. But I can do that and still not give up the pieces of me that others view as broken. I can retain my mind and simply try to shape self and world to fit together.

Neurodivergence. We diverge from the norm. We’re not broken. We just fit differently. And it’s not all our job to make ourselves the right shape to fit into society, because sometimes we’re not that flexible. Sometimes society has to be flexible as well. I don’t want to feel broken anymore. I don’t want people to tell me I’m broken anymore. I have some more work to do to be able to function and to fit myself to society, but so do most people. I want that to be ok. I want it to be ok if I’m at a party and I say that I have to leave because it’s too noisy for me or because people are talking about diets. I want it to be ok if I show up to a party wearing fuzzy footie pajamas because I had a rough day and I need the sensory calming (see me up there in my onesie? That was the best party I’ve ever been to). There is nothing WRONG with these things. They don’t make me unhappy. What makes me unhappy is when people can’t accept that that’s how I cope. I am not a problem.