Let’s talk: navigating misophonia & an eating disorder

Hi kids!

Happy Monday! I love that, “happy Monday”. In a world that often dreads Monday, I think the poor day needs some excitement. I mean, new week, fresh start, get pumped about it. It’s also most definitely fall here in New Hampshire between the color of the leaves and the amount of people slamming on their breaks to pull off the HIGHWAY (sans a turn signal) to take “scenic pictures” quadrupling in the past week.

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Just cheesin’ 🙂

This post is a hard one. Not because it’s hard to read (okay, I admit, it’s on the longer side of the spectrum), but because it requires me to be vulnerable in order to get the points out that I want. I’ve been vulnerable on this blog before, that’s not new, it’s actually kind of my M.O. I’m extremely transparent with my eating disorder recovery story and am at a place where I’m comfortable talking about it and getting into the nitty gritty dark parts. I haven’t talked as much about my experiences with misophonia. Mainly out of fear of misunderstanding, or of judgement, which I realize is rather irrational (kind of, mental health issues can be a tricky discussion topic but I hope to be one of the humans that changes this viewpoint), but it’s still where I am at with it. So today I’m choosing to give the middle finger to my fears and am putting this out there because it’s important.

Grab some coff and let’s get this show on the road.

*Friendly disclaimer: if you have/are in recovery from an eating disorder, please keep your own personal wellbeing in mind if you choose to continue reading. While this post is not entirely focused on my ED experience, there are topics which could present as triggers.*

For those of you who don’t know, or are new to my blog (welcome, hi!), I deal with misophonia. What even is this? Simply put, it’s an adverse reaction to a specific stimulus which causes various forms of discomfort for the individual. Stimuli can include auditory, visual, or both, and adverse reactions can include anxiety, anger, irritation, physiological responses ect. Scientists think that the anterior insular cortex (AIC) may be partially responsible for the reactions observed in misophonia. Here is an article from Kumar et al. (2015) which explains the phenomenon and the underlying mechanisms thought to be involved that you can read if you would like to make your inner-nerd happy.

For me, my biggest trigger since childhood has been eating, and this is both auditory and visual. I also was more sensitive to loud noises than others, but this is semi-common in kids so it was never explored. I remember from a young age, probably around 7, I absolutely hated seeing people eat. I felt like I was drowning, and sure this is dramatic but it’s very real when you’re young and don’t understand what’s happening. I didn’t like to be around others eating, I felt very uncomfortable and stressed. My parents were my biggest triggers, most likely just due to being around them the most and also because I could get angry and get away from the situation whereas when in a more public setting this would be more difficult/socially unacceptable. Over the years I dealt with increasing anxiety, mostly general across the board in my life. I competed in jump rope nationally and even though I loved the sport I always felt very inadequate on the team, like I wasn’t “good enough”. I also didn’t enjoy being around my teammates all that much, and remember especially dreading team dinners which we often had around competitions. There was so much discomfort that I had and also felt the need to hide and keep secret.

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Nugget Sarah questioning life

I obviously can’t give my whole entire detailed life story with misophonia (I’m going to just call it “miso”) and an eating disorder in this one blog post. I’m going to touch on the major things and jump around a little bit. Fast forward to age 12ish, I stopped jump rope very abruptly. The abruptness is a pattern that stuck around, through middle and high school, and even today I still struggle with this. The stop to competing… it was a mix between anxiousness around performing and not feeling like I could keep up (which mind you, I was doing just fine, hello overreacting brain), and also an increasing discomfort of being around others – specifically larger groups.

It was around this time that my eating disorder was in the beginning stages of development, and leaving the sport really provided a growing place for my ED. I lacked the physical output that I was accustomed to having for the greater part of my childhood and needed an outlet for my negative energy. I already was uneasy with being around others in settings involving food and eating, and I think my anxiety took a turn to manifest itself around my own experiences with food and eating.

I wasn’t the girl who wanted to look like the models in magazines or on TV. I didn’t necessarily dislike how I looked. That came as a secondary thing once I was already in the trenches of my ED. This isn’t something I’ve talked about much in my life but I think it’s VERY important to get out because it’s a misconception that ED’s are primarily caused from body image issues. I actually just hated food and had very adverse responses to it/eating it/people eating.

One thing that I began to notice as my ED progressed was that when watching other people eat, I would feel like I was eating and would feel very out of control in this moment. It was both an emotional and physical experience. I could feel my heart rate increasing, I would get warmer and sometimes even notice my body would begin to sweat, I would feel the same exact way as I did when I was eating. One thing about miso is that there are noted physiological responses which include an increased HR and even a “flight or fight” response during a trigger. It was almost that my miso would lead me to have a physiological response and this coupled with the ED led me to feel like I was the one triggering myself which then made me want to avoid food even more because 1. it caused me a great deal of stress, and 2. I would feel like I already ate so eating again would cause even more anxiety. Definition of a vicious cycle.

This pattern persisted throughout HS and early college. Even to this day I still experience this and find it challenging to be around others in situations involving food and eating. I think the key difference is that at this point, I am aware of what is going on, my innate response, and why I have this response (aka miso) which I didn’t have an awareness of until after my most recent round of treatment in 2012-2013. So, let’s jump now to that time period. Fast forward, I relapsed in the summer of 2012 following three simultaneous stress fractures after a series of back to back adventure races/endurance events. Perks of low bone density at 18 when you also are convinced you’re invincible, please note sarcasm.

I think my ED is a coping mechanism for the miso. ACTUALLY, NO. IT IS, there is no “I think” about that. However, at certain times it has served as a coping mechanism more than others. Specifically, before I was totally aware of the association between the miso and ED it surely was.

When I was in treatment, I kind of just hated everything. I was numb to a lot of it. Oddly enough this go was actually on my terms. It was an IOP (intensive outpatient), and I am super thankful for this and also believe that’s why it proved to be helpful for me because I integrated it into my daily life. We had group dinner which was difficult on both the miso and ED level. For the most part, I felt out of control on the ED. At this point, I wasn’t aware that miso was “a thing”. I never talked about it because I thought I would be judged and I assumed people would think I was crazy or lying to get out of eating, ect. I thought something was wrong with me and I think that is one of the reasons my ED kept morphing itself throughout the years, because I needed that coping mechanism, I needed to numb out, I needed the escape. I needed to not feel things. Starving myself did that. I still noticed everything, but it didn’t matter because I was so mingled into my ED that my primary focus was on driving myself further into the rabbit hole because it provided me space to not have to feel.

I can rather firmly state that the ED was my “best” coping mechanism for miso. Note the quotation marks around “best”, because it worked, but it will literally take me out if I use it to the degree that I need it in my daily life. I’m at a point with my recovery that I don’t use these behaviors, nor do I have the desire to do so, and I’m capable to look at them objectively without then wanting them back. I realize they aren’t going to help me feel better, only numb out. They don’t help me do the things which actually bring loads of joy to my life – learning, hiking, biking, running, writing. I can’t think when I’m in the rabbit hole, I can’t feel much either, but that “trade-off” isn’t worth it.

“The problem is that you don’t just choose recovery. You have to keep choosing recovery, over and over and over again. You have to make that choice 5-6 times each day. You have to make that choice even when you really don’t want to. It’s not a single choice, and it’s not easy.” ― Marya Hornbacher

Let me clarify – it has taken me YEARS to get here. You don’t just go through treatment and ta-da you’re all better and healed. The healing takes time. A lot of time. And a lot of feeling.

What did 2013-now look like? When did I learn about miso? How did I begin to separate the miso from my ED or even understand that they are very separate but also very combined and how did/do I navigate this? What helps? What makes the miso worse? There are so many questions one could ask. At first, fresh out of the IOP program I thought I was just working through my ED. I thought I was “too sensitive”. I thought I needed to be stronger mentally and not let things get to me, to stop allowing myself to be triggered out of frustration of certain noises and visual stimuli (because at this point it was far from just eating that triggered me). While yes, I was most definitely still working on puzzle piecing together the pieces of myself that required more time to heal, it wasn’t only an ED I was navigating how to manage. I first learned what miso was in 2014 while reading an article that had popped up on my news-feed, and can recall reading it and being like “HOLY F*CK!”. Mind blown. Then I started researching it, I wanted to learn everything there was about this mystery issue. Mainly because I was pretty sure I found my answer. A few therapy sessions and doctors appointments later and a lot of going over how I had felt, yeah, found my golden ticket to explaining a lot of the shit I was feeling.

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When I learned that miso was a thing, that’s when separating the two entities began to start. Things started to make sense. I began to understand why watching someone chew made me want to claw my eyes out. Or why hearing someone scuff their feet make me want to not eat. I had some major sensory triggers and one stellar AF (I’m being sarcastic AF) coping mechanism. What did I do with this new found information? Well, for starters, I made a list of all the things that set me off into an internal rage. As I mentioned, miso can have both auditory and visual stimuli triggers, and I have both. For the most part they are auditory, but eating and repetitive motions are two big visual ones for me. Also, “anticipatory anxiety” can almost be worse than the actual thing. I listed to an episode on one part podcast which discusses daily living with miso and this anticipatory anxiety was mentioned. It’s the anxiety felt when anticipating a situation. For example, I experience this at the beginning of every semester with school because one of my biggest auditory issues is the sound of typing, and what do most college students use to take notes? LAPTOPS. Let me tell you, I would like to throw every laptop on my college campus out the window or take a hammer to them. This anticipation is most certainty one of the things that makes miso worse, because I’m already at a heightened level of stimulation prior to the stimulus I fear even occurring. This is also why the ED helped me so much, it took me down a level (or ten). My brain was literally starving and therefore I never found myself getting as provoked.

The anger that is felt with being triggered, at least for me, is a mix of anxiety and anger – angst. It’s my natural response. That and the “fight or flight”, well I tend to do both of these. Fight (anger) – but this is primarily self-directed, and flight (see ya later) – as in I’ll leave the situation, usually abruptly. The self-directed anger is mentally draining and most often stems from when I’m being triggered and need to leave a situation. While on one side I know I am taking care of my needs in that moment, I also usually feel pathetic that I can’t just get my shit together. In these moments I’m self-conscious about leaving, worried about what people may think, and I feel guilty for feeling what I feel. It’s isolating. Both are isolating, miso and ED’s. There’s this sense of being alone in a battle with your brain, a battle that seems to be caused by yourself, but that you also can’t escape. It’s cyclical, the thoughts, they just play over and over again in your mind and it can drive you up a wall or down a rabbit hole.

Do I think my ED could have been prevented if more people knew what miso was and it was detected when I was a child? Unlikely. Because once I made the association of feeling more anxious with food as a response to being triggered on the miso level, but that not eating reduced this and the level of angst I experienced internally – I was screwed. It’s almost like I had this thing that would take away the anxiety and mental pain that I was getting from numerous angles in daily life, how could I NOT use that? My ED made me more function more “normally” by societal standards, I mean if you ignore the fact that I was intentionally starving myself so that I could function in social settings, then yes I was doing just dandy. I’m not saying the only reason I dealt with my ED was from the over-stimulation, there were other factors, but this was a big one and it remains something that I have to keep my eyes out for.

Separating the ED and miso took time, but once I was aware of the two distinct issues it became easier. I’ve been able to figure out other coping mechanisms for the miso, and while they most certainty aren’t as “secret”, they are much better for my well-being and sanity. Specifically, noise-cancelling headphones work wonders, cherry-picking my undergraduate class schedule to chose profs who don’t allow laptops, avoiding the gym at busier times (I’ve previously blogged about how the gym is super stimulating for me), and the top notch helpful skills include things on the self-care spectrum: spending time outside in nature (hiking has been very healing for me both because it isn’t stimulating and it’s provided me space to process), making sure I get enough sleep, meditating, having enough “quiet time”, and that my nutrition is solid.

That last one probably threw you. Nutrition, solid? But, Sarah you said starving yourself helps? YEAH. This one is tricky. If I’m consistent with my food intake and eating things which make me feel good and function well, this is helpful. When anything becomes erratic or I get off schedule, this is when it’s hurtful. I get too hungry (when I’m doing well from the ED perspective) and I become more sensitive. I know I need food in this instance, my brain needs the fuel so it can chill. But there is a VERY VERY slippery slope here because if I for some reason am triggered on the ED level, being too hungry shifts to “wanting” more of that. Like a craving, because I will never forget how well “too hungry” in a maladaptive way helps reduce the pain. The greatest counter for preventing a relapse for me is being aware of the latter and keeping an eye on myself because like other forms of addiction, ED’s like to creep up silently and before you know it you’re ten feet under.

I’ve found ways to keep moving forward. Sure, there are plenty of days that feel absolutely debilitating, where every single little thing gets to me. Where I feel like my brain might actually explode if another person pops gum in my ear or I can’t escape from a class or work when I’m being triggered. Sometimes the answer is leaving class for 5 minutes, or just not going that day because I know I’m a good student and will still manage the coursework and honestly manage it better than if I forced myself to stay. Sometimes I secretly wear ear plugs at work or school. Or maybe if I have time to take a nap, I’ll do that. What I’m saying is that there are ways to manage all of this. It’s a lot, it’s overwhelming, and it’s hard, but it can be done.

While I would never wish either miso or an ED on a single person, I’m not pissed about dealing with them. After all, isn’t there a saying that if we all put our personal shit-sandwich into a pile, we would pick our own back up because it’s familiar? I’ve learned A LOT about myself as a human being throughout the healing process. I’ve learned what supports me and what I need to avoid at all costs. I’ve found what lights my soul on fire with excitement. I understand the importance of self-care. I know that I have to be honest to myself first and foremost, and that if I need help with something I’m aloud to ask for that. I’ve given myself permission to not always be okay, and that if I’m not okay to not beat myself up over it because it is what it is. I’ve learned that my best tool is to advocate for myself, even when I don’t feel like it or when it’s an inconvenience. I’m painfully aware than while sometimes I want to just throw in the towel and say F it, I’m actually much much happier in my life now and more fulfilled overall.

There are some striking similarities between managing miso and optimizing my continued stability in recovery from an ED. I need to take care of myself, I have to be VERY honest, and at the end of the day I have to accept that I am where I am and that I am trying and that means the world.

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If there is anything I can tell you, and this is general about mental health, you NEED to figure out your triggers. Understand them, challenge them but respect their existence. Find your people, the ones that “get” you and that you trust, and I mean TRUST. Allow them to help you. Allow yourself to help you. Know that you are smarter than you think or give yourself credit for. Find what makes your soul happy, the things that you can’t stop smiling about, and do more of that. You can get through whatever it is you’re dealing with, and you’re entirely worth it.

You can’t constantly drag yourself down and think that you’re a failure, or believe that you don’t deserve things, or think that you’re useless. It’s negative, degrading, self-deprecating. I’m not saying you have to love who you are, or even really like, but you at least need to accept it. Accept YOU, for all of the pieces and the parts and the ingredients that make you yourself because nobody else has all of those same parts. So you’re actually kind of really special in your own weird unique human way. Your parts are yours, and they’re yours to keep. You may not like me very much for saying that, but it’s the truth. You can hide them, you can shove them down, you can pretend they don’t exist, but the reality is none of that is actually super helpful. It’s hiding who you really are which doesn’t feel very good inside.

Work with your parts. Try to understand them. Try to give them value and allow them to help you reach your goals and your dreams and whatever the heck it is you want to do with your life. Most importantly, figure out a way to have a positive relationship with your being. Stop being at war with yourself. Stop doubting your existence.

“Your relationship with yourself sets the tone for every other relationship you have.” ― Robert Holden

XO,S

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