Simone Brown

Tag: health

  • It Won’t Kill You (Until It Does)

    It Won’t Kill You (Until It Does)

    Tip: Writing about being 19 might make you feel 19, but you’re still 24.

    I’ve been holding off on talking about my eating disorder for the past few years. I’m nearing 7 years in recovery. Why haven’t I passed the time writing essay after essay about how brave I am for overcoming the most deadly mental illness in the world? Especially considering how freely I will voice my opinion on other matters and how much admiration I hold for others fighting these same battles.

    Primarily, it’s because I don’t really subscribe to the narrative that I’m powerful and inspiring for managing my mental health, nor do I think it gives me some magical insight that requires others to pay attention to me. Nothing I have to say about eating disorders is profound or unique; I am one of 30 million women who will struggle with an eating disorder in their life.

    I also struggle to write about it because I used to read about it. A lot. If you weren’t around for Tumblr’s golden age, you might have missed out on the very insidious content of models contorted into humiliating poses with a Picsart grunge filter smashed on top. To the untrained eye, it’s just weird university students testing out a new hobby. To me, though, it meant everything. I worshipped these women as my idols; their bodies were works of art I was dedicating my life to replicating with shaky hands.

    Even once I started therapy, I would scour recovery content, looking for any “trade secrets” these people accidentally let slip. You told me you did X to show how ridiculous you were acting back then, but now all I can think of is how I should try X to see if it works. Even if the content was a 10-minute video of a woman explaining exactly how her eating disorder ruined her life, all I heard was “blah blah THIS IS MY WEIGHT blah blah BIG/SMALL NUMBERS blah blah LOOK AT MY BODY.”

    Video after video, post after post, book after book; if I just read the right inspirational quote, I would surely find the strength to battle my inner demons, right? I tricked myself into believing that I was doing something good by constantly, incessantly consuming media about eating disorders. I don’t write about eating disorders because I know all too well that even the most well-meaning message is going to be corrupted in the eyes of someone’s eating disorder.

    There’s one more reason why I don’t write about eating disorders, and it’s a doozy. Some of the worst moments of my life happened because I had an eating disorder. Not all of them, but enough that I get uncomfortable addressing my past behaviours and the kinds of thoughts that arose as a result of my severe mental illness. I did and said some truly heinous things in the name of my eating disorder, and I feel a lot of shame about them. It feels awkward admitting that not only did I have an eating disorder, but I was kind of a shitty person because of my eating disorder.

    For me, there’s a delicate balance between acknowledging my mistakes and self-flagellation; just like there’s a delicate balance between excusing shitty behaviour and forgiveness. When you have an eating disorder, your brain is literally starving itself back into a child-like state. What little energy you have gets diverted from those valuable skills of critical thinking and logic into the basic human functions. This leads to a lot of poor decisions and vulnerability, which affects everyone who is watching in horror as you drop a nuke on your life. As I’ve already said, I won’t be divulging the details of my eating disorder to anyone except a licensed therapist, but trust me that they happened.

    Now for the twist: Yes, I don’t want to talk about my eating disorder, and yet I am writing this today. Eating disorders are inherently contradictory, and I guess so am I. At least I’m self-aware, right? My current position (with no promises I won’t change my mind tomorrow) is that even if I have my reservations, there is something serious happening that needs to be addressed.

    Thanks to extensive therapy, I am trained to recognize the patterns that crop up right before my eating disorder makes its grand entrance. It concerns me that what was once inside my head is being mirrored in the world around me. There’s been an uptick in discourse surrounding eating disorders, at least for someone with their finger on the pulse (perhaps you never really move on?). It feels like a resurrection of a truly dark cultural movement that will inevitably steal the youth of millions of girls, if not their lives. What used to be called ‘coke-skinny’ is now being called ‘ozempic-skinny’, but it’s all the same cancer. We are watching celebrities shrink at alarming rates, our medical system is collapsing, and food costs are rising. Blink, and you miss it, but suddenly we are living in one of those self-sufficient terrariums with eating disorders breeding like mold. How are we supposed to take care of ourselves in these conditions?

    Still, I do. I begrudgingly do the work every day to make sure I am never in the position to lose myself so completely to my mental illness again. I write myself love letters on post-it notes and stick them around my room when I’m feeling self-critical. I repeat the mantras gifted to me by wiser women about taking up the space I deserve and never accepting less than “enough”. I turn dinner time into celebrations of friendship and love. I act on my hunger: for opportunities, for knowledge, for nachos, for even better days.

    I won’t pretend I’m perfect to sell the dream of “recovery”. I will promise that life gets a little easier on the exact day that choosing to get better isn’t even a choice anymore, it’s the only option.

    The brutal, honest truth is that I don’t have any kind of solution right now. I’m treading water just like everyone else, amidst diet pills and the press junket for Wicked. Still, I feel better in my body than I ever have before because of those first steps I took 7 years ago. Maybe someday I’ll have something more profound or inspiring to say about my experience having an eating disorder. For right now, all I really care about is being a voice on the side of getting better.

    If I haven’t made it explicit enough, eating disorders will ruin your life. You will not get relief by hurting yourself. When you brush fingertips against death, you will only want to grab it with both hands. You need to get better. You need to want to get better. You need to choose to get better. If you don’t choose it today, there will be fewer tomorrows.

    Tip: Having an eating disorder won’t kill you. Until it does.

  • What Could Be More Selfish Than That?

    What Could Be More Selfish Than That?

    “Selfish”: (of a person, action, or motive) lacking consideration for other people.

    Autistic people rarely get to be selfish.

    The existence of “accommodations” might lead you to believe that, actually, Autistic people are frequently selfish. After all, they are the ones asking the non-Autistic population to adjust their behaviours, right? However, consider how much and how often those same Autistic people are really the ones accommodating others. We are constantly masking ourselves to be more palatable. It’s not even asked of us; it’s assumed. We are also the ones living with the consequences of being unselfish, having a meltdown in the bathroom stall as quietly as possible before returning to the group.

    I can’t remember the last time I, as an Autistic person, unapologetically took up as much space as I needed. What I can remember is the last time I disassociated in public to cope with the overwhelming environment my friends chose as our hangout spot. We don’t consider driving a friend to the airport or bringing a coworker coffee a burden; we consider it a part of building a thriving community. So why is it that when suddenly it’s an Autistic person asking for something, it is an “accommodation?”

    Let’s look at an example in the form of “disclosing” autism. When I introduce myself to someone new, it usually comes up (as naturally as I can manage) that I’m Autistic. That’s because it is socially MY responsibility to inform others about my disability and MY responsibility to seek out accommodations. Consider that no one has to disclose they don’t like cold weather; they simply do what is best for themselves (in this case, wearing a jacket), and everyone accepts it. Know someone long enough and they don’t think twice about offering to let you borrow a pair of mittens when it snows. Someone with a peanut allergy isn’t asking for accommodations by choosing the nut-free meal at a restaurant; they’re just prioritizing their health and well-being.

    Disclosure is risky for Autistic people because of this lens of “selfishness” through which we view “accommodations.” If you really believe that Autistic people are protected in non-Autistic communities, then you don’t speak with enough Autistic people. The discrimination associated with Autism will compound when I disclose, all for the meagre reward of consideration.

    Autistic advocacy is another example. Too often, non-Autistic people will stretch the boundaries of what little advocacy space Autism receives to fit themselves in. In doing so, they are stepping on the toes of actual Autistic people. Caregivers are the ones expected to speak up because no one cares when the actual Autistic person wants or needs something. This means that, no matter how well-intentioned, caregivers default to the voice that advocates rather than the ear that listens. Not only is this infantilizing and even humiliating, but it also reinforces the abnormality of Autistic people speaking up and asking for things themselves.

    Every once in a while, someone will speak about “ways you can support your Autistic father, mother, child, partner, friend,” and everyone will applaud them for their stellar perspective on how ANOTHER person’s lived experience might affect them. Accommodations are always framed as the burden that one must bear in loving an Autistic person. Rather than tell them to kick rocks, Autistic people have to be graceful and delicate in their response. “Love this! Thank you for speaking up :)” We say as we watch the algorithm send their blog post into the spotlight while our own words stay stuck in the shadows. What becomes of our raw, human experiences is a watered-down, motivational anecdote about how we’re all in this together. It’s such a rare opportunity that we don’t want to scare away the few people trying to help. Still, it’s hard not to feel frustrated when I am once again smiling and nodding along to a presentation on neurodiversity that ends with the astounding revelation that Autistic people are human and therefore have human needs.

    A stereotype of Autism is that we lack empathy. I can’t speak for every Autistic person, but at least for myself, I sometimes feel I have too much empathy. I am caught up in how my existence, in its most natural form, might be inconveniencing or uncomfortable for others. Am I stimming too loudly? Am I moving in a distracting way? Do I seem rude if I put on my headphones? Should I laugh at the joke even if I don’t get it? I care more about how other people feel than I do about myself, and that often gets me into sticky situations. There are consequences to being selfless for Autistic people. Masking is exhausting, advocating is divisive, and disclosing can be dangerous. I say yes to things I want to say no to, and I don’t implement lifestyle changes that would genuinely relax and comfort me. It’s not that I lack empathy; it’s that I have a different style of communication, and therefore, my empathy is expressed differently.

    Non-Autistic people are privileged and, oftentimes, ignorant of that privilege. While I am counting the seconds of eye contact and thinking about where I’ve placed my hands in relation to their hands, they are solely invested in the act of building community on their terms. The majority of non-Autistic people do not adapt their behaviours or their environment to fit the needs of Autistic conversation partners, because they never consider that those needs might differ from their own. What can be more selfish than that?

    I think Autistic people should be as selfish as they want to be. They live in a world that isn’t built for them (if you subscribe to the social model of disability), and their attempts to self-advocate, even in minute ways, get labelled as “demands” or “adaptations” rather than as a natural variety in behaviour that exists among humans. Selfishness is a part of building community; it gives us the means to take care of ourselves. Without being selfish, how could we express and differentiate ourselves? How would we know who we love and who we tolerate? Everyone, not just Autistic people, deserves consideration from time to time. It is what keeps us safe, happy, and comfortable. And everyone, including Autistic people, deserves that for consideration not to be a big deal.

  • ‘Madness’, Medical Misogyny and Misdiagnoses: The Woes of the Chronically Ill Woman

    ‘Madness’, Medical Misogyny and Misdiagnoses: The Woes of the Chronically Ill Woman

    During my childhood, I can remember doctors dismissing my mother every time she brought up something about my health that was worrying her. It’s just growing pains. Kids hurt themselves all the time. She needs to get out more. It’s a bad cold. One doctor even suggested my hands’ recent malfunctions were because of my parents’ divorce (that happened when I was six)!

    In the eyes of my doctors, I went from an accident-prone kid to a mentally-ill teenager.

    When I was old enough to go to my appointments on my own, my mother resisted it. She was never the kind of mother to stop me from exploring my independence, so her diligence about the doctor’s office seemed weirdly out of character. ‘You know what you’re going to say, right? Don’t leave until they listen to you. Repeat exactly what you told me. Don’t take no for an answer. Trust what you are feeling and trust your body.’ I thought she was a hypochondriac, and so did my family doctor.

    They were relieved to deal with me instead of her. I would smile and nod along with whatever they said without ever asking questions. I didn’t understand what my mother had been trying to teach me. I let a lot of professionals tell me I was perfectly healthy even though I was struggling because I trusted them to know my body best. I got used to thinking, ‘that’s weird’, and going about my day in situations where most people would rush to a walk-in clinic.

    It only got worse as I aged. In the eyes of my doctors, I went from an accident-prone kid to a mentally-ill teenager. Every illness, pain and problem could be chalked up to the burden of puberty and a turbulent social life. When I complained about fatigue and a lack of sleep, I got lectured on bad sleep hygiene, but no one ever asked why a sixteen-year-old could sleep from 10 pm to 3 pm without stirring. Each month I wondered if I would mistake my appendix bursting for cramps because I was told periods hurt for everyone. My therapist suggested I try meditating and deep breathing, but I still ended every day feeling like I had been hit by a truck.

    Frustration bubbled in me from sixteen to nineteen years old. The doctors I saw didn’t see anything wrong with me. Every test came back normal. Eventually, they stopped listening to my symptoms altogether. I got a strong muscle relaxer to target my headaches and reboot my sleep schedule, and every new pain was solved by upping my dosage and drinking more water.

    After I aged out of my paediatric office, I resorted to going to walk-ins and demanding someone pay attention to me, damn it. After years of overworking my liver without any improvement, I weaned myself off my medication and started journaling the ebbs and flows of my body. For nearly two years, I’ve been bouncing from doctor to doctor. All the while, my body is breaking down even more.

    The fight is exhausting, but what makes it worse is that no one believes me. It’s the thing my mother wanted to hide from me, though she couldn’t make the world change overnight. I am graced with labels like ‘hysterical,’ ‘stressed,’ ‘mentally ill,’ and ‘sensitive,’ never to be heard and never to be believed.

    The fastest way to get more tests was to take up space in these offices that didn’t want me, plant my feet, and refuse to leave until someone gave me the courtesy of a reference. Like my mother had hoped, I learned to stand up for myself. But neither of us expected how little it would end up mattering. I was denied my medical records, had my appointments cancelled, placed on endless holds, hung up on, and abandoned by the places meant to give me answers.

    She gave me her spirit and her stubbornness – I used them every day.

    Through it all, my mother held my hand and rubbed my back. She told me I was strong, that this moment would pass; things would hurt less tomorrow. She drove me to doctor’s appointments and hugged me while I broke down in parking lots out of frustration. When I begged her to let me give up, she reminded me how much more fight I had in me. She gave me her spirit and her stubbornness – I used them every day.

    Sometimes we reminisce about all the places we have been and the things we have tried in order to fix my broken body. We can laugh at the ridiculously sexist things I have been told and the nonsensical diagnoses doctors have given me to usher me out the door faster. Secretly though, I know it hurts her to see how much I’m hurting. She calls me a piece of herself that she happily gave away; she feels all my pain as if it were her own.

    We both blame ourselves for the doctors of my youth and the failures of our medical system. Had she dragged along my father, taken up more space, demanded more things, cried, screamed, and sat on the floor of my doctor’s office, maybe I wouldn’t be the one doing these things today. Unfortunately, it wouldn’t have mattered either way.

    We are women, I am chronically ill, and no amount of advocacy or motherly protection could have saved me.

    Originally published on Heroica Women.