When Mental Illness Makes You a Hypocrite

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I do a lot of things that I tell other people they shouldn’t do. Basically every day. I tell other people they shouldn’t skip meals or think of food as good and bad (food is not moral). But here I am, skipping breakfast literally every day and judging the hell out of my own food. It’s basically the most common mental illness experience as far as I can understand: we all think we’re uniquely bad in some way and deserve the cruelty we heap on ourselves in a way that no one else ever could.

I’ve been feeling it a lot lately though because mental illness also limits my ability to follow through on my values. The March for Our Lives was this weekend, and it’s something that I care a lot about. I believe deeply in the importance of public demonstrations, and of coming together when you have a cause. I didn’t go. I wasn’t busy. I could have gone, quite easily in fact. But I didn’t. The thought of it made me anxious and exhausted. The marches I have been to in the past knocked me out for a day or two afterwards, and honestly I have too much shit happening right now to manage that.

I feel awful about it.

If one of my friends came to me and said they feel like they aren’t doing enough for the movements they care about because they don’t go to marches and call their representatives, I’d remind them that there are a thousand ways to make a difference. Writing, talking to friends, supporting those people who are on the front lines, volunteering, working at an organization that supports the community, pushing for accessibility in events and spaces…these are all things that I do. I’d tell them that all of these things are important, and that staying functional and happy as an oppressed person is honestly job #1.

But I can’t listen to it when it comes to me. I’m special. I should be able to do more than other people, or do things that make me miserable because of…reasons.

It’s doubly frustrating because it feels like no matter what I do I betray my values in some way: go to a March, push myself too hard, feel like shit, and betray my strong value that each person has something to bring to social justice movements and it doesn’t have to be marching in the streets, and it’s ok to recognize your own limits. Or, don’t go, and feel like I’m betraying the movements I care about.

It’s amazing how many of these instances come up. I think we all have places where we have to compromise our values because we’re human and fallible and we can’t do all the things that we would like to or feel we should do. I can’t be vegan because I would actually literally die due to my sensory sensitivities+eating disorder. I can’t call legislators because it sets off my anxiety and I am a wreck before and after. I’m really awful at setting boundaries despite telling other people that they’re super healthy (because hey when you’re depressed your brain tells you any boundaries will make people leave you forever).

There are a lot of things that frustrate me about having mental illness/disability. But the worst is unquestionably that it impacts my ability to be a good person.

And yet.

Mental illness is not an excuse to be a bad person. But sometimes it’s definitely an excuse to not do all of the hundreds of things you’d like to do to be a good person. And I have to remind myself that there’s a difference between being a bad person and not being the best person (heyo look there’s my old friend black and white thinking). It’s easy to think that you’re making excuses for inappropriate behavior when you try to accommodate your disability. It’s easy to think you’ll slide into treating people badly because well I’m mentally ill and it’s just how I am. It’s easy to think only anxiety will keep you vigilant.

Sometimes I get so wrapped up in myself that I’m convinced the line between “using my disability as an excuse to be a shithead” and “accommodating my disability” is blurry and grey and hard to understand. I don’t think that’s actually true. Sure, there are some edge cases like “how often can I cancel before I really am a bad friend?”. But “should I choose not to do this thing that’s really hard for me and instead focus on things that use my talents”? That’s not one of them.

So sure, I might feel like a hypocrite or worry that I’m betraying my values, and even feel like I’m ignoring my own advice by even having those feelings (seriously, anxious people can feel anxious about anything). But I’d know if I were truly violating my own ethics. One of the hardest things to do when you’re mentally ill is trust your own assessment of a situation. But our own assessments are so important when it comes to our own values. I’m going to start practicing; I am living up to my values to the best of my ability. And that’s good enough, no matter what anyone else says.

 

How The Good Place Does Mental Illness Representation Right

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It’s rare that a mainstream sitcom has a character dealing with mental illness that doesn’t irritate the living hell out of me. It’s also rare that any media ever represents philosophy without irritating the living hell out of me, but The Good Place is magic and it does both of these things. Since I’m so often pointing out ways that media fails people with mental illnesses, I thought that for today’s post I’d focus on how The Good Place has done mental illness right and what other shows can learn from it.

Note: I will be spoiling up through Season 2, Episode 11.

The main person that I want to focus on in The Good Place is Chidi, however there are a few other individuals who can be read with a mental illness or neurodivergent lens and I’d like to address them at the end.

Chidi is not introduced as a mentally ill character. He is actually introduced as someone we could reasonably assume is supposed to be in The Good Place. He’s relatively in control, he’s quite intelligent, he’s a good person. We fall the fuck in love with him. He’s supposed to be our main character’s soulmate, and we view him as too good for her.

I highly appreciate this because when you first meet someone with mental illness you don’t know that they’re mentally ill. Typically we mask. We don’t disclose until we trust other people or until we have to. I love that just as in real life, we get to know Chidi just as a person, not as the token anxious person, but as a person like any other.

Only over time do we notice this anxiety that he’s holding in all the time, that he’s constantly worried and fearful, that he can’t make decisions. We start to become irritated with him, why does he behave this way, why is he so frustrating? Because we haven’t been told what it’s like inside for him, we judge (although of course Chidi is charming and kind, so we don’t judge too harshly).

But then we start to see the ways that anxiety can hurt people, the downsides of Chidi’s anxiety. We see the episode where he hurts his friend over a pair of boots, and how he can’t be counted on to be the best man at his friend’s wedding because the anxiety is overwhelming and the pressure gets to him. We see how his anxiety damages him and others, even as he’s trying so hard to be a good person.

This is one of the most realistic ways that I have ever seen anxiety portrayed. Your understanding of it and of the person who has it grows over time, and sometimes you see the positive elements and sometimes you see the negative elements. Sometimes you feel like you understand, or like they’re just like anyone else, and other times you wonder what the hell they’re doing.

But through it all, The Good Place also shows the way anxiety makes chidi thoughtful and exacting, the way he works so hard, and how he can be an amazing friend, mentor, and teacher when he learns to manage the anxiety.

And then after two season of SHOWING us Chidi, and letting us get to know him the way you would an actual human, only THEN does he open up and tell us with amazing vulnerability what it feels like for him. Because when we’re mentally ill we don’t just spill it everywhere to everyone, we wait until it’s impacted something and we feel like we need to explain and backtrack. And he does it so perfectly.

In Season 2, Episode 10, when Eleanor reveals her feelings about him, Chidi explains that his brain is the sound that a fork makes when it gets stuck in the food disposal. His brain is constantly hitting that grinding moment that is irritating and overwhelming and doesn’t go anywhere. Because we know Chidi and care about him, we’re open to hearing this explanation, and it snaps so many things into place.

I’m so glad that with the latest episode Chidi was judged on his anxiety again, and found wanting, because as an audience member I got so angry. I was on Chidi’s side because I knew who he was, and how he was still a good person despite the times anxiety got the better of him. I wanted the judge to understand him and be on his side the way I was. THAT feeling is how I know The Good Place got it right, because I love Chidi with his full history as someone who deals with anxiety. I want to hold him responsible for when it screws things up, but I get that it’s part of him and even a lovable part. I understand that when he cares too much it’s not always a bad thing. It feels so good to see someone like me on screen.

 

How To Share A Space With Your Partner (when you both have accessibility needs)

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As we continue in the Series That Never Ends (parts 1, 2, and 3), I like to dream that this will be the final installment. But I thought that last week, and here we are. Who knows what exciting new topics will be birthed within this blog post?

In the meantime, there’s a subgenre of competing access needs that I have never seen addressed, but that seems VERY important to discuss, and I have many Thoughts about it. That subgenre is when you are married to or living with someone whose access needs in some ways compete with your own.

But Olivia, you might say, how often does that happen? Well surprisingly often. I personally know…well almost every couple I know has at least a few accommodations they’re working with and that means two people have to find out how to accommodate each other basically 24/7. I know one couple in which one has severe anxiety and the other has severe misophonia making requests for noise accommodations a challenge, one couple in which one person has PTSD that is triggered by criticism, and another who has anxiety triggered by mess, meaning conversations about who has to take care of the house or whether things are being kept up can turn into meltdowns.

What do you do? How do you provide for different needs and make space for different ways of reacting to emotions?

I do not have the answers. I have some suggestions.

Get Yourself a Safe Space

More than anything else in the world, and perhaps this is simply because I am anxious introvert, I must recommend that every person has at least one room that is exclusively theirs or that feels 100% safe. It’s hard to articulate the way that having place to go where you don’t feel environmental stress or discomfort can bring your base level of functioning up. It allows a small amount of respite. When you’re living with someone who has differing needs from your own and the rest of the house may be a space of negotiation and compromise, having one area that is 100% you can make the difference between “home is exhausting” and “I have a place to recharge.”

That place to recharge allows you to disengage if a solution isn’t happening immediately, or if the shared spaces simply become too much for you. It helps to limit the amount of resentment you might feel when your needs don’t get met, helps keep you from hitting a meltdown point, and that space to breathe allows you to brainstorm solutions when your emotions are lowered.

So #1 piece is to make sure that you have one place where your needs are met, that belongs to you. But the rest of your house still exists, and you might want to eat meals with your housemate or occasionally interact with them. What do you do?

Talking About It

Because accommodations can be a fraught topic, I personally recommend setting aside a specific time to discuss them when no one’s emotions are high, but additionally setting up ongoing check ins so that it’s normal to discuss accommodations, and you don’t get that Serious Conversation vibe that can freak anyone out. Check in with your partner and see if the accommodations you’ve put in place are working for them. Let them know if they forget about yours. Make it normal, make it easy, and make it common to talk about whatever you need to be comfortable in your home.

When, Where, and How to Accommodate

Next, I think it’s not only important to discuss the types of behaviors that are difficult for each other (e.g. your constant need for reassurance sets off my anxiety) but also to discuss different spaces in the house, and how each one can be used most effectively. This might mean each of you makes a list of what you’d ideally like, and then you decide what’s easy (you institute it immediately), what you can do sometimes (maybe you have a specific room for it) and what will be challenging (we’ll get to this soon). In my home, the computer room is our quiet space. We talk there sometimes, but if one of us is on our computer with headphones on, it’s not time to bring up anything serious.

Do you want to set aside certain safe spaces? Do you want to say that “in space x I ask that you don’t eat, or don’t use this fidget”? It can help to give certain behaviors an expected time and place rather than out of the blue. This also gives someone who might need to fidget, bring up their anxieties, use an accommodation device, or accommodate their own needs in some other way a place they can go to do it. There also might be certain spaces that are particularly challenging to one of you. For a long time our computer room was set up such that I was facing away from the door, and my husband could come up and touch me on the shoulder without me noticing him at all. This was Not Pleasant so we rearranged.

 

When you hit the hard lines (e.g. one person can’t control their facial muscles and the other has misophonia) you may have to set specific rooms where things can or cannot happen, or decide that one person’s particular set of needs has to trump. It’s important to discuss these and have a way to bring it up.

Integrating Accommodations Into Your Life

Finally, it’s good to create a language for moving forward. Circumstances will change over time. Maybe you were fine with saying your partner gets to eat in the computer room with you, but you’re having a shit day and you need more space. You need to have a way to communicate that, and an understanding that the “rules” will change in the moment. It’s also good to have a way to remind your partner if they’re doing something they’d said they won’t (e.g. my partner knows I prefer there be music or noise on if he’s eating next to me). It can feel like nagging, but sometimes it does take time to develop the habit. If your partner feels like it you might brainstorm ways to build the habit together, e.g. a small visual reminder like a post it.

Essentially, there are a few ways you can manage competing access needs in a home: you can say that certain people get their accommodations at a specific time or place. You can say that one person’s need trumps another. Or you can try to find ways to make the needs mesh. A mix of both will probably be the best for everyone, but you have to talk about it to find what works for you.

 

Misophonia, Now With Sharing!

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Last week we spent some time talking about what misophonia was and some ways for managing it. Unfortunately we’re still low on research, so it was a lot of preliminary and experimental ideas.

But misophonia is not something that happens in isolation. More often than not, misophonia triggers are sounds that other people make: breathing, sneezing, eating, drinking. What’s a person to do when they have to manage social rules in addition to the intense emotions and anxiety of misophonia? Today’s post will focus on how to talk to other people, ask for help, and let others know that they might be triggering your misophonia.

I am a shameless thief. If there are a bunch of techniques for coping that fall under the header of a diagnosis I don’t have, I give 0 fucks and steal the hell out of them. In this case, because misophonia is such a new term and diagnosis, I’m going to be borrowing a lot from advice about anxiety and managing anxiety triggers with other people.

Note: If you are concerned that someone in your life might respond poorly to a disclosure, use your own judgment. Some people are truly assholes, and if they learn that something upsets you they will intentionally do it. Protect yourself! But if you trust someone, honestly and openness are typically my favorite ways forward.

So how the &@#$@#$& do I tell my friends/spouse/coworkers that they set off my misophonia?

One of the particular difficulties of misophonia is that it’s often anxiety centered on other people, which means that you have to manage social rules while in a heightened state. Ew. It also means navigating the challenging place of having to tell someone, likely someone close to you, that something they do not only irritates you, but makes you so angry you want to die.

No matter what, it’s possible that talking about your misophonia with someone will end poorly. They may think you’re overreacting, they may feel offended that they’re a trigger, or they simply might forget to stop doing the trigger. But there are some things you can do to make the conversation more likely to end well.

First, if you are in the midst of an episode, it’s not the best time to have an extended conversation about misophonia and coping skills. Try to remove yourself from the situation, or ask for a quick accommodation (hey could you turn on some music/stop rubbing your socks together/etc) so that you can calm down before you get into the weeds about what you really need, what triggers you, and what misophonia is.

Second, when you do want to talk to someone about a behavior they do that triggers your misophonia, prepare ahead of time. Start by knowing the background of misophonia and the science that shows it’s real. If you come to someone from the perspective that you have a problem and you’re asking them for help, they’re far more likely to make adjustments. Having a “diagnosis” can make it more legitimate and easier for people to understand. It’s nice to start by laying out the situation, for example:
1. I have misophonia. Misophonia is ___
2. Behavior x sets off my misophonia, and when I hear that noise I feel ___

That way you can lead into how they can help by asking them to adjust the behavior.
3. Could you not do behavior x, or only do behavior x in a different room, or have other noise on when you do behavior x?

You may even want to practice this ahead of time depending upon the person and the situation. It’s best if you can come in with a particular accommodation that you would like them to do, but sometimes you don’t have an idea and that’s ok. You may also have to spend some time explaining misophonia, have some links on hand with research, or give a person time to get used to the idea. I try to focus less on what they’re doing, and more on the fact that my brain processes something differently and I need help to manage it. People love to help. People hate to change.

What Are Some Examples of Accommodations?

I know a number of people who have talked to a partner or family member, and everyone is in to the idea of accommodating the misophonia, but that’s where they get stuck.

Many people will be willing to stop a behavior once they realize it’s frustrating or upsetting to you, but in some cases they may forget, or it may be a behavior they simply can’t stop (like eating) or something they do mindlessly (picking at fingernails). Those might require some work together to figure out the best way to move forward. I have found that the best way to make this effective is to approach it as “we are problem solving together” rather than “you need to fix something that annoys me about you.”

Some examples of accommodations include:
-having a “safe word” so they know if they’re triggering you
-can you start habitually having extra noise during meal times, e.g. TV or music?
-If they forget often, can you add a visual somewhere in their space like a post it note that will remind them?
-is there a specific place that they can eat/clip their nails/etc. to give you some space?
-is it easier for you if there is advance warning? Can your partner/friend alert you in advance when they’re about to do one of your triggers?

It’s important to remember that you’re likely working to change someone’s habits, and that’s challenging. It can easily devolve into nagging. It’s probably a good idea to discuss how the other person prefers you to bring it up if they forget or make a mistake. Maybe you institute check ins so that you can let them know if there have been problems or if there’s anything new you want to discuss. It might seem difficult, touchy, or potentially fight-inducing, but COMMUNICATION is so important.

“Anxious thoughts are supremely personal, but let your partner in on them. It’s an important part of intimacy. You will often be thinking about what you need to do to feel safe, what feels bad for you and what could go wrong. You will also have an enormous capacity to think of other people – anxious people do – but make sure that you let you partner in on the thoughts that arrest you. Keeping things too much to yourself has a way of widening the distance between two people.” From Hey Sigmund.

I think the same thing goes for misophonia. Letting them know “hey, I”m getting anxious and upset” can be enough to start a conversation that heads off a nasty interaction or building resentment.

Speaking of which, the WORST way forward is to do nothing, to communicate once and then hope for the best, or to otherwise foster resentment. It’s SO easy to feel resentful when someone unknowingly and blithely goes about their life making you miserable, but we have to remember that they simply don’t know and don’t experience it the way we do. We have to train our friends/partners/families to understand what our experience is like and to be empathetic to that response. How do we do that? Boundaries!

How Do You Set and Reinforce Boundaries?

First and foremost, the thing that I want to reiterate about boundaries (and this is advice for myself as well as others) is that setting a boundary is not a one time experience. You don’t tell someone your boundary and then it’s done and everything is good. It’s a process over time.

I like to state boundaries in terms of my needs rather than someone else’s behaviors. “I feel shitty when I hear this noise.” That’s a fact and no one can debate that fact. It also doesn’t put the other person on the defensive immediately. You can follow the script I laid out above. But there’s one final step to setting a boundary, and that’s introducing a consequence. It might mean that you will leave the room whenever they do the behavior, you may stop talking to them, or you may leave the house. It depends on what makes the most sense.

Over time, if the other person continues to do the behavior that you asked them not to do, you may have to remind them. “Hey, I asked you not to chew with your mouth open. Could you stop please? If you don’t, I’m going to go upstairs.” If they continue to ignore the boundary, enact the consequence. Captain Awkward has some great resources about setting boundaries, although they are not misophonia specific. BUT they can be applied, because in many ways navigating misophonia together is like navigating any other anxiety inducing trigger.

So What Are The Steps Again?

Ok, I talked a lot so here’s a tl;dr.

  1. If you feel comfortable disclosing, the first step is to tell the person who triggers you what misophonia is and what they’re doing that sets you off.
  2. The second step is to work together to create a plan of accommodations. This might be the other person ceasing the behavior, or adding in other noises to offset.
  3. Reinforce the boundary! The other person may forget, decide it’s not worth it, or just get careless. If that happens, it’s useful to remind them, and regularly revisit the plan to see if it’s working for everyone.

There you go, solved all your misophonia problems. JK, we have more to talk about. My next post will cover competing access needs, which is a much larger topic than misophonia, but we’re going to dive in through the lens of misophonia. Woohoo!