7 (Totally Wrong) Reasons I Didn’t Think I Had An Eating Disorder

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When I was diagnosed with an eating disorder, there was one question I just couldn’t get out of my head: “How did I miss this?”

Coming out of denial has been such a terrifying process. It’s like discovering that I’d fallen asleep at the wheel, and, eyes open now, I’m forced to assess the damage I can’t even remember causing.

One minute, I swear, I was on the road — the next, there are wires attached to my chest, and I’m getting an EKG and wondering how the hell I got there.

The shock comes in waves, and some triggers feel more sensitive than others. My stomach drops every time I hear my dietician say the word “refeeding.” I cringe when a doctor says “starvation.” They feel like heavy words, too grim, and the gravity hasn’t set in for me just yet.

I can’t decide what scares me more — the fact that I’m so malnourished that I have to reintroduce my body to food, as though we’re strangers to one another, or that my fear of food still, at times, outweighs my fear of destroying my own body.

How could I have fallen this far down the rabbit hole and not noticed?

I want to share what I’ve realized about my own denial, not just to get it off my chest, but because I think it speaks to the larger issue of how eating disorders are characterized.

Because as I began to unpack the reasons why I missed the signs, one thing became obvious: It’s not that I missed it.

It’s that our culture never gave me the tools to recognize an eating disorder in the first place.

1. My eating disorder wasn’t as ‘obvious’ as I thought it would be.

My eating disorder didn’t present in what I considered the “typical” way.

I wasn’t obsessively weighing myself, I wasn’t counting every calorie that I consumed, and I hated exercise. I didn’t cry if I ate a slice of pizza or have a deep-seated fear of butter. I didn’t fit the stereotype, which made the denial much easier to cling to.

My relationship to food and my body, though, was still dysfunctional.

Food caused me so much anxiety — the decisions involved, the binary of “good” and “bad” foods, having “too much” of something and “too little” of something else, and all the pressure of making the “right” choice.

Even with all of that anxiety, I pointed to the fact that I wasn’t trying to lose weight as “proof” I didn’t have an ED. I just wanted to stay exactly the same — which I insisted wasn’t about my body image or a fear of fat.

If I was always just a little hungry, I reasoned, I could prevent my body from ever changing. No one told me that an obsession with size, even if it’s not about getting smaller, is still an obsession rooted in a fear of fat.

Basic things like cooking or even looking in the pantry could send me spiraling. That anxiety led to cycles of restricting, in which I would eat very little, just to avoid the obsessive, overwhelming thoughts that emerged each and every time I had to make a decision around food.

It escalated, too, to the point of being unable to feed my own cats, for fear of making the “wrong choice” for them.

My partner is still solely responsible for determining what our cats eat and giving them food, because the panic I felt about their diets became too unmanageable for me.

My eating disorder also wasn’t as static as I expected. I had periods of time that I ate more, but as my life stressors increased, my restricting did, too. I thought eating disorders had to be constant and consistent, and mine wasn’t. I figured that let me off the hook, because it was “just stress.”

All of this is still dysfunctional, but in my mind, I could only picture the stereotypes that I had heard. I could eat pizza and ice cream! I could eat takeout! I wasn’t vomiting!

I was quick to point to the things that normalized my behavior, but eager to deny the things that were clearly disordered.

2. My body didn’t ‘look’ sick.

The one thing that still boggles my mind about eating disorders is that they truly have a mind of their own.

I knew, logically, that eating disorders can impact anyone of any body size. But I still denied having a problem, because the body that I saw in the mirror didn’t look emaciated.

Where was my terrifying “before” picture? And even if I tried to get help, who would believe me if I wasn’t “thin enough”?

But eating disorders don’t describe a type of body — they describe a specific relationship to food and to our bodies that causes psychological distress.

It took a long time before I was willing to accept that my body didn’t reflect whether or not I had an eating disorder; my state of mind did.

3. Everyone around me had disordered eating.

Disordered eating is everywhere. Skipping meals, weight loss resolutions, detoxes and fasts, even smoothies that replace meals are totally ubiquitous and, at times, inescapable.

When you’re immersed in diet culture, recognizing that you have an eating disorder can be impossible when everyone around you is validating your mentality, however unintentionally.

Being transgender especially, it’s normal for people to struggle with their bodies, and to push themselves to change as quickly as possible, no matter what it takes. And while gender dysphoria is a very serious struggle, I often used mine as an excuse to dig deeper into my eating disorder.

“It’s not an eating disorder,” I’d tell myself. “It’s just dysphoria.” But these aren’t mutually exclusive — in fact, this is why transgender people are at such an extraordinarily high risk for eating disorders.

How could I know that what was happening to me was dangerous if everywhere I looked, it was presented to me as normal and even desirable behavior?

4. My justifications for restricting seemed totally reasonable.

My eating disorder was really good at pointing fingers. For every disordered behavior or thought I had, I could always come up with a hundred excuses for why I engaged with food that way.

I went vegan for ethical reasons. I just hate cooking, okay? The kitchen is too messy. I’m saving money by skipping lunch. I don’t really have any food in the house. I’m a picky eater. I’m just lazy. I’m not good at meal planning. I’ve been so busy. I’m just saving room for dessert. I just prefer snacking throughout the day. I don’t need that. That doesn’t have vegetables. I’ll eat later.

I think a lot of people imagine that an eating disorder is a deliberate and conscious decision like a structured diet that spun out of control, but in reality, it’s a lot sneakier for many of us with EDs.

I didn’t wake up one morning and decide that I was going to stop eating. Rather, these little excuses that popped into my head enabled my restricting one meal at a time. And before I knew it? I had a much bigger problem.

My eating disorder wore down my defenses a little bit at a time — look how much creamer I put in my coffee! That’s practically breakfast! — which allowed it to escalate in an insidious, practically unrecognizable way.

It wasn’t until I was sitting in the doctor’s office, trying to explain what I was eating on a typical day (“Trail mix,” I explained, “and then I eat ice cream if I think I might faint”), that it finally hit me that I’d been duped.

5. It became my ‘new normal.’

Eating disorders are built on a house of lies, but if it’s the only house you’ve ever lived in, you just won’t see it that way.

One of the things that’s been most jarring about eating disorder recovery is realizing how skewed and even broken my barometer was around food.

I don’t remember what it’s like to feel “full” because I’ve spent so long being hungry. Things that I considered “a lot of food” turned out to be very little food to everyone else. I didn’t understand the difference between a meal and a snack.

I was convinced that hunger wasn’t a prompt that our bodies give us to eat, but rather, something that I had to fight to suppress by calculating the minimal amount of food I would need to manage. In other words, to me, hunger wasn’t natural — it was an ailment or a problem to “fix.”

When you have a relationship like this to food and to your body for a long time, it becomes the only reality that you know.

It’s like when my dietician asked me to have a nutritional shake and trail mix for breakfast, and I blurted out, “In the same sitting?” Hearing myself say that made me realize that, all along, I’d constructed rules that were strictly define by my fears, rather than the reality of what my body needed.

Recovery, for me, has been about completely dismantling that house of lies. It’s learning to be skeptical of everything you believed to be normal, and rather than allowing your eating disorder to dictate what “normal” is, it’s letting your body guide you to create an entirely new paradigm.

That paradigm is one that doesn’t react to hunger from a place of fear and trauma (fight or flight), but rather, from a place of body trust.

6. Having an eating disorder didn’t feel the way I thought it would.

I genuinely believed that if I had an eating disorder, I would have felt miserable all the time.

I was supposed to be angry, volatile, depressed! Instead, even in the midst of my disorder, I didn’t have the extreme despair that I assumed would accompany something as serious as an eating disorder.

But the reality is, eating disorders don’t always co-occur with a mood disorder. Mine didn’t — I have obsessive-compulsive disorder, not depression.

So if you’re expecting yourself to be constantly depressed? That may not be how EDs show up for you specifically.

You might actually feel “fine” — but it doesn’t mean that you are.

Mood swings can be part of it (and I certainly had my fair share), but some of us are more likely to experience emotional numbness, anxiety, irritability, restlessness, or even euphoria, rather than depression.

There is so much happening chemically in the midst of an eating disorder, it can be hard to predict how our emotions will respond, except to say that they can be super unpredictable.

Eating disorders are coping mechanisms, and as such, there really is no way you are “supposed” to feel in order for your eating disorder to be valid.

Truthfully, I felt the most depressed and despondent in recovery, when I first tried to start eating again. When I had to actually sit with my fear and discomfort instead of restricting, that’s when my mood absolutely crashed.

The misery that I felt when I started in recovery made it even harder to believe I had a problem, too. I kept thinking, “If this is treatment, shouldn’t it be making things better?”

But I promise you, that’s normal! Sometimes it does get worse before it gets better — and that’s just part of the process.

7. I thought I ‘knew better.’

I wrote about this in my last blog but it bears repeating: Anyone, even mental health advocates who write about this shit for a living, can have an eating disorder.

One of my gorgeous friends in recovery said to me recently, “Sam, you’re talking about eating disorders as though they aren’t mental illnesses.”

And that was the crux of the issue, really — I believed that if I had the right attitude, the right meal plan, or shared enough body positive Instagram posts, I could worm my way out of having an eating disorder.

But eating disorders are mental illnesses and they have to be treated as such. Reading a book or taking a selfie in a crop top can be empowering, and it can open the door to recovery, but eating disorders require more than positive thinking.

I needed help.

Eating disorders are so much bigger than an attitude adjustment. It’s asking you to create an entirely new relationship to your body, to your food, and to the world around you. That is a lifelong process — but a worthwhile one, too.

I’ve had an eating disorder most of my life, and yet it was unrecognizable to me.

And I can’t help but feel that, in a culture that was simply more informed about what eating disorders are and the diverse ways they show up, we’d all be much quicker to recognize them in ourselves and our loved ones.

That’s ultimately why I’m sharing my experiences so openly. I want each one of us to be able to embrace recovery, knowing that our struggles are valid regardless of how they compare to anyone else’s.

Please know: If you’re struggling with food for any reason — if it scares you, makes you angry, overwhelms you, whatever it is — there’s no harm in reaching out and talking to someone.

I’d recommend getting in touch with the National Eating Disorder Association, where you can chat with folks who are the experts in recognizing these complex disorders.

You deserve whatever support and affirmation you need to have a safe relationship with your body and with food.

And I hope that someday, we’ll live in a world where those relationships are modeled for us, so that we never have to question what that looks like.

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Want more real talk about recovery?

The conversation continues over on Patreon, where I film weekly videos talking about mental health, recovery, self-care, and more. This week’s video dives deeper into how social media can perpetuate denial in recovery — go check it out!

Photo by Toa Heftiba on Unsplash.

I preached body positivity — and sunk deeper into my eating disorder at the same time.

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I don’t usually write about my mental health when things are “fresh.”

Not in the last couple years, anyway. I prefer to let things marinate, and to make sure that the words I choose are empowering, uplifting, and most importantly, resolved.

I prefer to give advice when I’m on the other side of something — largely because I know I have a responsibility to my readers, to make sure I’m nudging them in the right direction. I know this blog can be a lifeline for folks who need something hopeful. I try to remember that.

But sometimes, when I perfectly package that hope for an audience, I can delude myself into thinking that I’ve cracked the code and, therefore, can tidily leave a struggle in the past. The perfect conclusion to the chapter, as it were.

“I know better now,” I think to myself. “I’ve learned my lesson.”

If you were to Google “transgender body positivity,” I’m fairly sure more than a few things I’ve written will come up. I’ve been interviewed for podcasts and articles, and hoisted up as an example of a trans person who — in a simple shift in perspective and following the right insta accounts — came to redefine his relationship to food and to his body.

Three articles that appeared in a Google search for "transgender body positivity," all written by Sam.
I wrote all three of these. Delightful.

That version of events is one that I love, because it’s so simple and comforting. One shiny, bright epiphany, and I emerge victorious, having evolved beyond any worldly, frivolous concerns about my stretch marks or eating ice cream for breakfast.

“Fuck you, diet culture!” I jubilantly exclaim. “I know better now. I’ve learned my lesson.“

When you are a mental health advocate and writer, especially in such a public way, it’s easy to trick yourself into thinking that you have all the answers to your own problems. But that illusion of control and self-awareness is exactly that — an illusion, and a deceitful one at that.

It’s easy to point to the years I’ve spent in this space, and everything I’ve published about this exact thing, and insist I’ve got things under control. It’s not my first rodeo, pal. Or second. Third. Fourth. (I’ve got experience on my side.)

If I can support others through their recovery, surely I can navigate my own. Even as I write that, I know it’s patently ridiculous — giving good advice is much easier than applying it to yourself, especially where mental illness is concerned.

But the version of me that I prefer is the one that said in this interview, as recently as last June, “When you get to the other side of whatever you’re struggling with, you’ll see that not taking those chances — living only half the life you could’ve been living — is a lot scarier than any disaster you imagined would come from eating that slice of cake or whatever it was.”

Says the person who is, really and truly, living in that fear in a life half-lived right at this very moment.

Body positivity has felt like a relationship I dove into at such a young age, long before I knew myself or even my eating disorder. And once I was in too deep, having positioned myself as triumphant, I didn’t know how to step back enough to ask for help.

I wanted to believe it was like an incantation I could say in front of the mirror several times — “all bodies are good bodies! all bodies are good bodies! all bodies are good bodies!” — and POOF! I was absolved of any guilt, shame, or fear I felt around food or my body.

I could say all the right things, like a script that I’d rehearsed, and love the idea and the image of myself when I peered through those rosy-colored lenses.

But where eating disorder recovery is concerned, a script — even when memorized — is not a substitute for the work.

And no amount of Instagram memes and photos of belly fat could touch on the old, painful wounds that had positioned food as my enemy, and my body as the site of a war.

Which is all to say, I am not recovered. The work hadn’t even begun. In fact, I used my proximity to body positive spaces to disregard the very idea that I needed help — and I’m paying the price physically, mentally, and emotionally now.

I wore body positivity like an accessory, to project the image of myself that I wanted to be, and my eating disorder reveled in the idea that I could suspend the reality of my illness simply by curating my social media accordingly.

My understanding of body positivity — and by extension, its roots in fat acceptance and liberation — was shallow at best, but only because my eating disorder thrived so long as I sustained the illusion that I knew better. This was yet another way of convincing myself that I was in control, that I was smarter than my ED.

My disorder had a vested interest in lulling me into a false sense of security. I couldn’t have an eating disorder, I thought — disordered eating, maybe, but who doesn’t? I couldn’t because I was evolved. As if mental illness ever gives a fuck about the books you’ve read.

Eating disorders have a way of sneaking up on you. That realization is a new one for me — not because I didn’t logically understand that, but because I’ve only come to accept it in the context of my own lived experience in the last few days.

And I wish I could say that this epiphany came to me on my own, inspiring me to reclaim my life, but there’s no such heroism here. It came to the surface only because my doctor asked the right questions during a routine checkup, and my bloodwork revealed what I feared to be true — my body was coming undone in the absence of adequate, much less nutritious, food.

“I don’t understand how people decide when to eat,” I confessed to my therapist. His eyes widened with deep concern.

“They eat when they’re hungry, Sam,” he said gently.

At some point or another, I had utterly forgotten that simple, basic fact. There is a mechanism in the body, intended to guide me, and I’d cut all ties to it completely.

I don’t share this as a criticism of myself, but rather, as a very simple truth: Many of us who are lauded as faces of recovery are still, in many ways, right in the thick of it along with you.

Sometimes what you’re seeing is not a portrait of success, but rather, a small piece of a more elaborate, messy puzzle that we’re frantically trying to assemble behind the scenes, so that no one notices that we’re in pieces.

My eating disorder recovery is, in truth, in its very infancy. I’ve only recently stopped using “disordered eating” to obscure the reality, and this morning, finally spoke to a dietician that specializes in EDs.

This morning.

Today is, in actuality, the first real day of recovery. That’s three years after, by the way, I wrote these words: “No more justifications. No more excuses. Not another day . . . this is not control.”

I know there are readers who might have looked at my work in body positivity, and absorbed the misguided notion that eating disorders (or any kind of body negativity or food aversion) are simply mazes that we think (or in my case, write) ourselves out of.

If that were true, I wouldn’t be sitting here, sharing with you a very uncomfortable truth about recovery: There are no shortcuts, no mantras, and no quick fixes.

And as we glamorize the idea of an easily attainable self-love — as though it’s just one perfect crop top away — we miss the deeper work that must be done within ourselves, that no amount of sparkly, inspirational quotes we retweet can replace.

Trauma is not on the surface, and to strike the heart of it, we have to go deeper.

This is an awful and uncomfortable truth that I am coming to grips with — mainstream, watered-down body positivity can open the door and invite us in, but it’s up to us to do the real work of recovery.

And that begins not externally, but within us. Recovery is an ongoing commitment that we must choose every single day, deliberately and courageously, with as much rigorous honesty with ourselves and our support systems as humanly possible.

No matter how we curate our social media to remind us of where we’d like to be, the aspirational vision we create is never a substitute for the reality that we’re living in.

As is so often the case with eating disorders, I’m realizing, the aspiration — that “what could be” — so often becomes a compulsive, maddening drive, where we live in a future that we never arrive at.

And unless we commit ourselves to being grounded firmly in the present, even (and especially) when it’s uncomfortable to be here, we relinquish our power and fall under its spell.

My ED loved the naïveté of Insta-friendly body positivity, leveraging that illusion of safety to delude me into thinking I was in control, that I was better than all this.

And I can’t say I’m surprised by it — EDs seem to take many of the things we love (ice cream, yoga, fashion) and turn them against us in some way or another.

I don’t have all the answers, except to say this: We are works in progress, all of us, even those that you look up to. A pedestal is a lonely place to be, and loneliness, I think, is where eating disorders (and many mental illnesses) often thrive. I’ve been up here for too long, silently waiting to fall or for it to crumble underneath me — whichever came first.

As I make my descent, slowly climbing down from the pedestal and stepping into the light of my recovery, I’m going to embrace the truth that every one of us needs to remember: It is okay not to be okay.

It’s okay to not have all the answers, even if the rest of the world expects you to, even if you expect yourself to.

I am not, as some people have described me, “the face of transgender body positivity.” If I am, I don’t want to be — I don’t want any of us to be if that means we’re not allowed to be human.

I want you to scrub that image from your mind and, instead, know where I really was yesterday: Clinging onto a nutritional shake for dear life (literally — it’s kept me alive these last few months), having not showered for three days, while texting the words “I think I need help.”

So many of the advocates you look up to have had equally unromantic but profoundly brave moments just like that.

We do every single day, whether we have a selfie to prove it happened or not. (Some of us have group texts, and trust me, we are all on the Hot Mess Express together. Promise.)

If you’ve felt like you’re not allowed to “fail” (or rather, have an imperfect, messy, even fucked up recovery), I want to give you permission to live that truth, with every bit of honesty and vulnerability that you need.

It’s okay to let go of performing recovery. And trust me, I know how big of an ask that is, because that performance has been my security blanket (and the source of my denial) for so, so long.

You can surrender to the doubt, the fear, and the discomfort that comes with doing the work, and give yourself permission to be human. You can let go of that control and — I’m told, anyway — it will all be okay.

And this amazing community of recovery warriors that we’ve created with our memes, our inspirational quotes, and our crop tops? We will be right here, waiting to support you.

I can’t say that I know this for certain (hello, Day One), but I have a strong suspicion that this kind of honesty is where the real growth happens. And wherever there’s growth, I’ve found, that’s where the healing truly begins.

And that’s what we deserve, every one of us. Not the aspirational kind of healing, but the deeper stuff.

I want that for me. I want that for all of us.

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Struggling with food? Body stuff? Or just need someone to talk to? The National Eating Disorder Association (NEDA) is a wonderful place to start. They’ve been an incredible resource for me — and I hope they’ll be for you as well.

Before you go…

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This blog is not sponsored by any fancy pants investors that are trying to sell you stuff.

It’s funded by readers like you via Patreon!

Every donation counts. Help keep resources like these accessible to everyone that needs them! And help buy me a cup of coffee, because I write a lot of these blogs after work, late at night, so I could definitely use the caffeine.

Photo by Laurenz Kleinheider on Unsplash

Denying the existence of transgender and nonbinary people is not ‘scientific.’

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Folks often ask for shareable versions of the threads that I write on social media. In this new series, “Twitter Roundup,” I’ll be compiling threads worth saving! This thread focuses on the ways in which the social sciences are overlooked when talking about the existence of transgender and nonbinary people.

A gif that reads, “When people tell you who they are you believe them.”
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Hey, friend! Before you go…

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This blog is not sponsored by any fancy pants investors that are trying to sell you stuff.

It’s funded by readers like you via Patreon!

Every donation counts. Help keep resources like these accessible to everyone that needs them! And help buy me a cup of coffee, because I write a lot of these blogs after work, late at night, so I could definitely use the caffeine.

When they misgendered you at your memorial.

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There were drains hanging from my chest when I made the first phone call. Not even two days before, I was under the knife, having a surgeon — an artist — remake my chest. These are scars that you will never see.

“Hey,” I say softly into the phone. “I think you should come over. I’ll explain when you get here.”

When I hang up, I straighten my spine and I slap myself across the cheek. Our friends are coming over, and I remind myself that I can’t crumble, not now. I’ve never had to disclose that someone is dying, to shatter the world as they knew it with a single sentence. I guess because I was the one that was usually on the brink of death.

This was not the thunder I wanted stolen from me.

There’s a knock on my door, and the words are falling out of my mouth before I can think of how to say them. “I’m so sorry,” I whisper. “Cris isn’t going to make it.” We hold onto each other for dear life, the drains pressed between us, filling with my blood.

The color is already gone from my face; I’m waiting now to see your ghost.

/

You are difficult to contain. A neuroscientist, a poet, a drag queen, a teacher — queerness, for you, was simply your way of being in the world, the shimmer held in every cell in your body.

“They” as a pronoun was the most natural thing in the world, because I can’t imagine how “she” or “he” could hold everything that you are, that you were. They, as in, “I hold the contradictions and make them beautiful.” They, as in, “I wear my trauma as drag and spin it into gold.”

I never understood how anyone could look at you and not see “they,” or hear the mirth in your laughter and not believe it to be sheer magic or mischief, or look at your delicate hands and assign you any essence other than “everything.”

Everything, the totality.

You were the scientist who loved astrology. You were the poet who could seamlessly reference Grey’s Anatomy without missing a beat. You toiled in a lab with mice by day and wore eight-inch heels and glitter on a stage at night.

You moved between worlds, always chasing something — the secrets you found studying zebrafish, the catharsis in lip-synching pop songs in gay bars — and I fear that neither one was enough.

You could find the wisdom in a Kelly Clarkson song and in the DNA of a jellyfish. I remember thinking, I’ll follow this queen to the ends of the earth.

If only you had let me.

/

Your memorial is organized by email. This is, I think, the first time I really understood what it meant to die as a millennial. You’re just a few months shy of your 30th birthday, but if I think about that for too long, I want to set the whole world on fire.

It was foreshadowing, I realize, when you told me how your novel was going to end, just a few weeks before you died. How the characters, realizing the world is irredeemable, decide to burn it to the ground so something new can grow in its place.

You lit the metaphorical match in your bedroom on a Sunday afternoon, and I still don’t know if it was a smoke signal or a death wish. I’m not sure if you knew, either.

My whole world burns down with it. Your remains nourish the ground underneath me. Grief is a brutal and unforgiving teacher, offering lessons I never asked for. Your tombstone is a mirror reflecting back all the ways my story could’ve ended just like yours.

Your mother makes me promise that I won’t end my life like you did.

I have to grow in your place now, become something new.

You used to tell me that no one understood trauma quite like we did, like it was a language that we spoke fluently, sometimes morbidly and always earnestly. In that way, I’ll never stop hearing your voice.

/

Your graduate advisor responds to the email about your memorial. Gently, I remind him of your pronouns.

I think back to all the conversations we had about what it was like to be a transgender scientist — struggling to be seen, carefully measuring how much of yourself you could be and how much you had to hide.

Sometimes, over coffee, you’d admit to me, “I’m so tired.” The resignation in your eyes was like the dimming of a thousand stars at once.

Your advisor snaps back so harshly that the wind is knocked out of me. “That’s the side you knew, but Cris, the young man I knew, had many sides,” your advisor lectures.

How can you call it “sides” when you never asked to be deconstructed? When it’s the world splitting you apart, never allowing you to be whole in the first place?

How could he speak of you as though everything you were in life — all the magic that moved through you — was simply too inconvenient to acknowledge? How can you take a prism and demand one color?

I’m trying to find the words to explain to him how painful misgendering is, but my rage is boiling over — not just at him, but at a world that was never good enough for you, determined to take the beauty of your queerness and grind it to dust underneath a heavy heel.

I tell the professor that he should be ashamed. He calls me a “hectoring, self-absorbed, pompous twit.”

The aftertaste of the same poison that killed you is sitting on my tongue. The taste is familiar, metallic, and cold. I remember the anguish of being invisible, how it eroded your spirit, how it clipped your wings into pieces that neither of us could stitch back together.

Without wings, there was nothing to break your fall.

/

When a transgender person commits suicide, it’s almost always murder in slow motion.

When you cut a flower at the stem, no one is surprised when it wilts. When your petals fell, I tried to hold onto them as long as I could. The world might know you now as a statistic, but I knew you as you breathed and bloomed.

The morning memorial begins with a passionate plea about pronouns from a trans femme you knew, and I’m silently grateful for her courage. But I’m left trembling when I realize that you never lived to see the day when your life didn’t require a disclaimer — instead, your death now required one, too.

The professor gives the closing remarks. He stumbles over his words.

When he misgenders you, he tries to correct himself, stuttering. The pain in the room is palpable, a living reenactment of the pain you held in your last breath.

When he refers to you as a son, your mother — in a moment more powerful than my words can hold — adamantly corrects him.

“My child,” she says.

Her child who, after being flown to New York for a final time, would be turned over to ash. “I blew glitter over their body just before they were cremated,” your mother tells me.

And this is how you left us, anointed by the shimmering breath of your mother.

It was one final gesture to remind you that, while the world may not have seen you, we still did.

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selfcare

If you’re suicidal, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386, or reach the Crisis Text Line by texting “START” to 741741.

Hey, friend! Before you go…

cropped-heartThis blog is not sponsored by any fancy pants investors that are trying to sell you stuff.

It’s funded by readers like you via Patreon!

Every donation counts. Help keep resources like these accessible to everyone that needs them! And help buy me a cup of coffee, because I write a lot of these blogs after work, late at night, so I could definitely use the caffeine.

Photo by h heyerlein on Unsplash.

5 important mistakes I made as a partner to someone with chronic illness.

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About seven years ago, while at university, I fell in love.

Ray was easily one of the most brilliant and funny people I’d ever met — they stole my heart almost immediately.

While they can seem soft-spoken at first, they’re incredibly passionate and opinionated when you get to know them. They’re empathic, geeky, and tender. And they balance me out, too: their careful and considerate nature has tempered my impulsivity and reckless optimism many, many times.

In other words, we fit together wonderfully.

I knew Ray was special from the moment I met them. It probably doesn’t come as a surprise, then, that we later got married — and I’m very lucky to be able to say that after nearly seven years together, we are raising two perfect fur babies together (and more succulents than I can possibly count).

In many ways, ours is a love story that seems pretty typical. But in reality, it’s not quite.

Ray has a number of chronic illnesses, including Ehlers-Danlos syndrome (EDS) and arthritis. With this comes not only a lot of physical pain and mobility issues but total exhaustion day after day.

After years of being partners, I’d like to think I know a thing or two about supporting folks in my life with chronic illness. But as much as I hate admitting this, these were lessons that I often learned the hard way.

I want to share some of the mistakes that I’ve made, because I’m hopeful that other loved ones can learn from my experiences, and in doing so, they can offer the kind of support that chronically ill folks truly deserve — support that is unconditionally affirming.

So where did I mess up, exactly? Here are five of the big blunders I made, and what I learned as a result.

1. I assumed that we had the same definition of ‘happiness.’

I’m happiest when I’m busy. I know this about myself. If I don’t have several projects up in the air, a regular dose of sunshine, consistent friend dates, and a lot of yoga on the weekends, I’m not very functional.

Particularly as someone with obsessive-compulsive disorder and ADHD, the pace of my life and what’s on my calendar determines whether or not I’m functional on any given week.

Sometimes I would look at how my partner’s life was set up, though, and I’d wonder if they were making the “right” choices — just because their life didn’t look like mine.

How did they survive, I wondered, without regular social outings? Wouldn’t they feel better if they got out a little more? At first, I didn’t slow down to consider what happiness looked like for them. I used my own definition assuming that what worked for me would obviously work for them.

The reality is, though, that what makes me feel good is not necessarily going to make Ray feel good. What’s empowering or energizing for me could actually be completely draining, counterproductive, or even harmful for them.

I logically understood this. But even so, I’d still slip up at times, assuming that their life was lacking some key ingredient that their own recipe never called for.

In recent years, I started paying much closer attention to how my partner defines happiness. I work to support them in making whatever changes they deem helpful in pursuit of their goals, even if their goals look nothing like mine.

This means celebrating their successes, too, however they define success.

They get to steer the ship; it’s my job as a partner to support them in whatever direction they choose to go, and however they ask me to show up.

2. I had a lot of suggestions — but I wasn’t always making them accessible.

Ray and I have the kind of relationship where we do offer (solicited) suggestions to each other from time to time, always with the caveat that we aren’t pushing and we’re respectful when we offer guidance.

I began to notice, though, that sometimes my advice was consistently lacking something — accessibility.

If I was suggesting that my partner see a specialist, was I also offering to go with them? Was I making sure they had transportation covered? Was I helping them take notes on what questions needed answering?

Or was I just telling them what they should do without a plan of how we could make it happen?

If I was recommending that Ray join me for a particular (gentle) yoga or stretching class, had I spoken with the instructor first to ask if they knew how to work with clients with EDS? Was I willing to pay for a Lyft so that they didn’t have to walk to class with me? Had I researched if that particular activity was safe for their body in the first place?

Offering advice without consideration of how to make it actionable and accessible meant that my “advice” was useless — plain and simple.

Rather than creating additional work for my partner, it’s my responsibility to make sure I’m offering real support and not just ideas that will further overwhelm them.

3. I thought that nudging them to try new things would be helpful.

With my obsessive-compulsive disorder, I often need to stretch just outside of my comfort zone to improve my mental health. It’s helpful, then, when people in my life nudge me to go outside, try something new, and break out of my routine if I’m starting to isolate myself too much.

With Ray, it’s the total opposite. They need to stick to a reliable routine to ensure they have enough spoons to get their work done.

They have to mentally calculate whether or not they can afford to do something differently. If they stray from their routine on an average day, they risk exhausting themselves before they meet all their responsibilities, which can impact them for days or even weeks to come.

Earlier in our relationship, I did a lot of nudging — because I figured inching outside of their comfort zone would be helpful, rather than harmful, like it was for me. While my resistance to trying something new came from anxiety that I could work through, Ray’s resistance was a matter of survival.

That’s why, when we’re supporting any partner with chronic illness, we must always assume that they are the expert on their own experiences. I know now that my partner gets to determine the pace at which they move in and out of their comfort zone.

The best way I’ve found to navigate this is to ask questions! Some examples of what I would ask:

  • “Are you looking to brainstorm ways to feel a little better? Or do you just need the space to talk about what you’re feeling?”
  • “What is the most helpful thing I could do to support you right now?”
  • “Do you have the energy to try something a little different? Or are you on ‘power save mode’ right now?”

I know that sometimes, my partner feels stuck and needs a solid brainstorm to figure out how to address certain challenges. But they get to decide when that happens — not me.

4. I didn’t ask exactly how I should engage with others around their disabilities.

It didn’t occur to me for the longest time what about their experiences I should or shouldn’t disclose. Instead, I focused on whether or not I was comfortable having a conversation, rather than asking Ray what they did and didn’t want others to know.

An example: My partner was unable to work for a period of time because of their disabilities.

At first, I had no problem letting people know if they asked what my partner did for work. But after a while, the judgment from others made me uncomfortable — so rather than affirming my partner’s decision and pushing back on ableism when I encountered it, I eventually found myself being dishonest about our situation.

“Well, they’re preparing to go back to school, so they’re taking some time…”

“They’re freelancing at the moment…”

“They’re waiting for the right opportunity to come along…”

Here’s what I should have done from the start: had a conversation with my partner and asked them how they’d like me to speak about their situation if and when someone asked. 

Maybe they wanted me to have those tough conversations, explicitly supporting their decision to take care of themselves. Seizing those teachable moments could have been a powerful moment for allyship! Or maybe they wanted to keep that information private, and we could instead find a way to disengage in a way they felt comfortable with.

Either way, they should’ve been the one to decide on that narrative — not me.

I know now that it’s so important to check in with them and ensure that I’m having conversations around their disabilities in ways they feel comfortable with, rather than assuming that I know what those boundaries are.

(Which is why I first got their consent to write this article… and then we read through it together to ensure it felt empowering and accurate!)

5. I unconsciously carried the assumption that there was or someday would be a ‘solution.’

When it comes to chronic illness, there isn’t always a “solution.” There can be management, maintenance, even treatment… but in many instances, I’ve had to learn to accept that sometimes survival and self-care are the very best we can do.

Many of us grow up with the idea that if we go to a doctor, they have the answers, and that we’ll eventually be “better.” It’s a comforting thought, but it doesn’t hold up in reality, especially when we’re talking about invisible illnesses.

I had to learn quite early on that more often than not, doctors don’t have any answers for Ray — and sometimes they do more harm than good. Not every appointment was going to yield something helpful. No matter how persistently we advocate, there’s no guarantee that we will ever arrive at a “solution” that magically helps Ray feel good (or even okay) in their body.

Doctors don’t always have answers. In fact, most of the time, Ray knows a hell of a lot more about Ehlers-Danlos Syndrome than their doctors do.

I’ve had to stop living in this fantasy world where Ray someday arrives at a magical “cure,” and instead, engage with the reality of their disabilities. That often means waking up each morning, checking in and asking, “What’s the very best we can do today?”

The truth is, there are ups and downs with these illnesses — sometimes a lot more downs than ups.

Was I prepared for that? If I wasn’t, I had better get my shit together.

I love and support my partner not in spite of their disabilities, but as a whole person, which is inclusive of every struggle and identity that they hold.

Loving someone that way means letting go of the idea that “health” is at the finish line — or that there’s a “finish line” at all — and instead, I focus on whatever goals Ray aspires towards, even if that goal is simply surviving another day.

What do they need from me as their partner to make their goals and aspirations a reality? That’s where I devote my energy now, and Ray gets to set the pace and the path forward.

The assumption that things will someday “improve” or “get better” — and that we, as partners, are in some way responsible for making that happen — has to be dismantled.

Otherwise, we’re not really loving them, are we? We’re setting up an expectation, rather than loving the person who’s right in front of us. It’s an illusion that’s rooted in a very ableist frame of mind.

Our job is to love our partners as they are, body and soul, here in this moment. And that means embracing an uncertain future — knowing that while love may not protect us from every challenge we’ll face together, its warmth and light can sustain us.

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Hey, friend! Before you go…

cropped-heartThis blog is not sponsored by any fancy pants investors that are trying to sell you stuff.

It’s funded by readers like you via Patreon!

Every donation counts. Help keep resources like these accessible to everyone that needs them! And help buy me a cup of coffee, because I write a lot of these blogs after work, late at night, so I could definitely use the caffeine.

 

Photo by Hunter Newton on Unsplash.

My parents and I survived my ‘Rapid Onset Gender Dysphoria.’ This is our story.

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Yes, it’s true.

I am a survivor of Rapid Onset Gender Dysphoria, otherwise known as ROGD.

And if you’d talked to my mother back then, you would’ve gotten a very panicked account of how abrupt my coming out was.

But my story isn’t hers to tell.

(She, by the way, would totally agree with that statement. This is why she isn’t posting about me in online forums or participating in “studies.” Also: Hi Mom, love you.)

And while I wish I had the Perfect Transgender Narrative™ to convince you of my validity, I don’t. I didn’t always know I was transgender. I’m not even sure exactly when my dysphoria really started.

But if you knew my story, you might realize why that makes sense.

I was a sheltered kid growing up in suburban Michigan. And while I’d been bullied for being “weird,” and always felt like the “black sheep” wherever I went, I knew literally nothing about queer or transgender people… much less “gender dysphoria.”

There was no context to place that sense of isolation into. It never occurred to me that gender was a thing I could have feelings about, and I certainly didn’t know that I didn’t have to identify as a girl if it didn’t exactly fit.

Having an older brother that was so close to me in age, my androgyny wasn’t exactly odd, either.

I figured it was a natural product of being so close to him. We shared our toys as kids, played video games for hours, and my many interests — ranging from the stereotypically “feminine” to “masculine” — made me gender-ambivalent at best.

If you’d asked me how I felt about my body as I got older, I would’ve said I “felt ugly.” When asked to describe myself? “I’m just weird.” There was no other vocabulary available to me, because my world was incredibly, incredibly tiny.

Even if I did have some sense of dysphoria, I didn’t have the ability to place where it was coming from.

I was a kid with obsessive-compulsive disorder and ADHD. As such, I was in a constant state of anxiety and agitation growing up. When it became unmanageable, I would get really depressed.

In other words, emotional overwhelm was a constant in my life. Teasing apart where any of it came from wasn’t a simple process.

It only became more complicated as I got older. When I was a teenager, I developed an eating disorder and then found myself in an abusive relationship. The disconnect from my own body from there only became more intense. I was numb to it in so many ways.

Gender was not my concern at that time — simply surviving my mental illness and that relationship was all I could muster.

But thoughts about it started to surface, slowly but surely. When I began considering taking on a more androgynous appearance, and started questioning gender in my late teens, my abuser told me that I “wouldn’t be attractive anymore.”

My self-esteem was already so diminished. His comment made me feel so deeply ashamed for ever having considered being anything other than hyperfeminine and cisgender.

So I didn’t just tiptoe back into the closet… I leapt back in.

At first, I put any kind of gender-related thoughts on the highest shelf in a locked box. I couldn’t handle the idea of destabilizing my life in the way that transition — and by extension, ending that relationship — would’ve triggered.

There just wasn’t room for questioning my identity at that time in my life.

Between my OCD and my traumatic relationship, I was repressing the hell out of any gender-questioning thoughts. I didn’t have the emotional capacity, resources, and support to work through it.

It wasn’t until I got out of that relationship and started therapy that I could begin to untangle everything.

As I started to better manage my OCD and heal from the relationship that had destroyed my self-esteem, those questions about gender start to find their way to the surface again. I begin to wonder.

And I started searching online.

That’s when I really began questioning if some of my earlier feelings about being out of place — especially among girls my age — meant something.

I wondered if being disconnected from my body might be connected. I wondered if being drawn to androgyny (and the little things, like enjoying playing as “boy” characters on my favorite video games) might have meaning, too.

And I’ll be honest, I didn’t know for certain if those aspects of my earlier experiences did or didn’t have a gendered significance. Very few of us do in actuality, because identity is complicated, and gender is, too.

Not to mention, my history was very complex and painful. The thing about dysphoria is that so much of it is very abstract. Feelings aren’t as crystal clear as a lot of cisgender people seem to suggest.

Dysphoria isn’t this obvious neon sign that appears from the minute you exit the womb, especially in a society that does everything it can to make transgender people totally invisible to begin with.

We often don’t know where our feelings are coming from, especially if our backgrounds include trauma.

Which is why changing circumstances externally — our clothes, our pronouns, our names — can be so important. We do it to see how our feelings change so we can better understand what caused them, and more importantly, what we can do about them.

So I came out as genderqueer when I was 19 years old. I felt uncomfortable continuing to identify as a “girl” when I was having all these questions about my identity and my body.

I cut my hair, started changing how I dressed, started binding my chest, and began to imagine what my future might look like. I wanted to see if I would be happier or more comfortable in doing so.

For my parents, though, we’d never really had a conversation about my gender. What they saw was their teenager going off to college and catching something quite an awful lot like “rapid onset gender dysphoria.”

Except instead of the internet, it was that dang liberal arts school corrupting me.

But it became obvious, with each step of my social transition, that something magical was happening — I was coming out of my shell. I was happier. I felt a little more adventurous. I felt a little more at home.

I sat with myself and I said, “Okay. There’s something here.” I knew there was because with every change I made, I felt a little lighter in a way I never had before.

I soon learned that a disconnect from your body or self, disordered eating, anxiety, and a sense of isolation can all be a part of the transgender experience we call “dysphoria.”

It seems to be something a lot of us share. And more importantly, when some people transition, those experiences improve or even go away entirely.

When I finally understood that a gender transition was making me feel better and brighter… I was thrilled. But I was also hit with waves of very acute, very new gender dysphoria.

My internal reality was solidifying, but my experiences as I moved through the world weren’t aligning at the same time. That gap became more and more stark — and much more painful.

This was the “rapid onset.”

And if you talk to transgender people, a lot of us have the same story — we know our truth, but it also magnifies our pain. There’s the new distress of realizing that no one else sees it but us. The pain of invisibility.

While you are becoming the person you are meant to be, you simultaneously become invisible to the rest of the world — even to the people you love.

That is traumatic — and it can come on gradually for some people, and quickly for others, depending on when you came to understand your identity.

I knew who I was and I wanted that to be recognized. But it wasn’t. And the more erased I felt, the more pain I experienced.

I found myself focusing more and more about the aspects of my body that kept me from feeling seen. I’d never felt comfortable in my own skin, but now I had a better understanding as to why — and I had a clearer idea of what needed to change.

That’s when I started considering hormones.

At 22 years old, I was now growing impatient and miserable. I didn’t share these things with my parents at first, though, out of a fear of being rejected. They were your typical Midwest “ranch dressing” kind of parents — they knew very little about what any of this gender stuff meant.

But I came out to them anyway.

They were, in the deepest sense of the word, confused.

But more than that, they were terrified, because they’d never once heard me talk about questioning my gender. For them, the pain I was describing was sudden and life-altering.

And, yes, “rapid.”

But it wasn’t the dysphoric feelings that were necessarily new. It was the urgency to address them that was new — because I learned there was a solution, a path I could finally take.

That urgency made the dysphoria feel stronger. But in all likelihood, it may have been there in some form all along.

But either way, it hardly seemed to matter when it began. I just needed to know if testosterone could help me. And if it didn’t? I could always stop.

So I held my breath, emailed my parents, and told them what I was prepared to do. And my mother especially — while she was terrified about what would happen next — did what every parent of a trans youth should be doing: she stood by me.

Rather than looking to change who I was, or digging for evidence that I was delusional, or blaming somebody else in my life… she pumped the brakes. She moved through her fears and came out on the other side of that as my biggest supporter.

And being supportive didn’t mean that she wasn’t afraid. It didn’t mean that she didn’t have questions, doubts, or worries. It didn’t mean that she understood everything that I was talking about.

What it meant was that she had the courage to walk through those fears with me, and do everything she could to support my own happiness, even if the path was totally unknown and even scary to her.

My mom didn’t see my coming out as a fluke, nor did she see my transition as a threat. She saw it as an opportunity for her to grow.

And while she stumbled and wasn’t always graceful, she did everything she could to be there for me, no matter what.

Screen Shot 2018-09-08 at 11.46.18 AMWith my family’s support, I began my medical transition. I won’t lie — I was scared, too, at first. I wondered if I could be mistaken. I wondered if it was my OCD playing tricks on me. I worried that maybe trauma had led me astray.

But after years in therapy, and multiple gender specialists weighing in, this was the conclusion we had all reached. It was worth a try.

I’m grateful every single day that I took the chance. And I’m just as grateful that my parents were by my side, supporting me through it.

I started hormones, I got top surgery, and with each step, there was a light in my eyes that wasn’t there before. I came alive. I was happier, more confident, and the emotional overwhelm that seemed to buzz around me my whole life slowly began to fade.

As my parents saw this unfolding, even they couldn’t deny what was happening. I was finally calm. I was optimistic. And most importantly, I was ecstatic.

And one of the greatest, most unexpected gifts of my transition?

My mom (who I will freely admit, like most teenagers, was not my favorite person growing up) became one of my best friends.

Even as my mom struggled to understand me (and still does sometimes), that has never once been an obstacle in her loving and supporting me.

My parents are proud of their gay, transgender son. I know this because they don’t hesitate to remind me.

And looking at their example — two people who really couldn’t have been more unprepared for a trans kid — is what still gives me hope, even as proponents of this pseudoscience try to undermine and invalidate trans youth.

Hope even for the parents that participated in the Rapid Onset Gender Dysphoria “study,” who may someday learn that their fear is worth embracing — that it’s an opportunity to grow, to love, and to listen.

An opportunity to better know this wonderful person that they brought into the world — to see, for the very first time, what lies in their heart, and to prove to them that they’re still worthy of love exactly as they are.

My parents embraced that opportunity despite all the grief that came with it. And when I ask them why, their answer to me is always simple: “Because we love you.”

We didn’t always know that I was transgender or that I even had gender dysphoria. But when my parents look at me today — and they see a happier, healthier adult — none of that really seems to matter anymore.

I hope that one day, we’ll live in a world where parents of transgender youth, no matter how “rapid” their coming out, will get to experience that same joy, too.

That moment when they look at their kids, brighter than ever, and finally understand that the journey is absolutely worth it.

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selfcare

If you’re suicidal, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386, or reach the Crisis Text Line by texting “START” to 741741.

 

Hey, friend! Before you go…

cropped-heartThis blog is not sponsored by any fancy pants investors that are trying to sell you stuff.

It’s funded by readers like you via Patreon!

Every donation counts. Help keep resources like these accessible to everyone that needs them! And help buy me a cup of coffee, because I write a lot of these blogs after work, late at night, so I could definitely use the caffeine.

If your ‘suicide prevention’ isn’t talking about the mental health system, you’re missing the point.

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As both a suicide attempt and loss survivor, I need to climb up onto my soapbox for a minute.

Suicide attempts, from a “preventative” standpoint, are rarely, if ever, as easily prevented as calling a hotline or a loved one. “Reaching out” — while incredibly important — is not the be-all-end-all of preventative strategies.

Especially considering the fact that many of us have a history of asking for help, and not getting the care that we needed.

I understand the impulse to ask, “Didn’t they know they could call me?” I asked myself that many times when I lost one of my best friends earlier this year. But this shows a very big misunderstanding of the emotional experience that many suicide attempt survivors have described.

Speaking from my own experience, when you are in a very acute amount of emotional distress, your thought process is not as linear or composed as you might assume.

The pain in that moment can eclipse everything else — past, present, future. It’s a sort of tunnel vision in which the pain becomes too great; in those moments, I’m cognitively incapable of stepping back to get the kind of perspective I might otherwise have.

This is why I always try to remind folks that suicide attempts don’t necessarily reflect a person’s overall state, as much as it does their level of pain in that particular moment.

To put it as a metaphor, suicide attempts remind me quite a bit of heart attacks, in the emotional sense.

After a certain point, the body’s resources can no longer fend off a very acute and painful event. It is so pronounced that your brain’s reaction is to scramble and do whatever is necessary to combat that pain, as immediately as possible.

We have some autonomy when we’re in that kind of pain. But so many of our actions are ultimately driven by the visceral agony we’re in. Our systems are flooded and overwhelmed, made worse by the adrenaline, the stress hormones, and for many of us, whatever substances we might be abusing — like alcohol — in a misguided attempt to cope.

But more often than not, unlike a heart attack, it’s also a pain that’s been building for weeks, months, or even years.

When we talk about “suicide prevention,” we focus too much on trying to understand the actual attempt, and not enough on accessibility of care.

We don’t do much to ensure that the pain doesn’t become that acute in the first place. We don’t focus enough on quality of life afterward. And most importantly, we rarely interrogate the systems in place that have failed to support them long before they reached this place.

It’s as though we’ve seen someone having a heart attack, but we start asking what they had for dinner the night before, or kicking ourselves for not offering them aspirin that morning.

When we talk about addressing heart disease, we’re not just trying to intervene in the mere moments before they happen — we know that isn’t enough, which seems like common sense in this context.

We talk about the whole person, and all of the ways in which their wellbeing needs to be prioritized well before they reach a crisis point.

But suicidality is still not viewed this way. We treat suicide attempts as very deliberate choices, rather than complex reactions that we know are better addressed sooner, not just puzzled over later.

The problem is, our mental health system isn’t set up to intervene at the moment when it’s needed.

Therapists and psychiatrists are still wildly inaccessible. And if you can find one that has availability and is covered by your insurance (assuming you have insurance), it often takes weeks, even months before you can actually see them.

If that clinician isn’t competent or a good fit? That’s additional weeks, months, and even years until you find someone who meets your needs. Which doesn’t include the months it takes for those treatments to start yielding real results.

I recently wrote a reported piece about a veteran with PTSD, for whom the nearest mental health provider that took his insurance was a staggering four hours away by car. And if he hadn’t had access to a vehicle? I’m not sure he would still be alive right now.

And all this assumes that mental health care isn’t so stigmatized in your community that you feel empowered to get help sooner rather than later, which is simply not the culture we live in.

This bureaucratic nightmare, combined with stigma, is why many people with mental health struggles often don’t seek help for nearly a decade (or more) after their symptoms set in, if they seek help at all.

And that’s why I bristle at the questions I so often hear after a suicide attempt. “Why didn’t they ask for help?” is the wrong question to ask. “What were they thinking?” is the wrong question to ask.

“What did WE do to help them, as a society?” is the question here. And more specifically, what were WE thinking, when we set up our mental health system to be so inaccessible?

I want to challenge us to think about what we’re doing to change this on a substantive, systemic level. This isn’t about reaching out. This is a call-to-action.

My own suicide note years ago simply read, “I’m sorry. I just can’t do this anymore.”

Not, “I don’t want to do this.”

Not, “I don’t have any other options.”

Not, “I don’t care about my loved ones.”

I simply said, “I just can’t.” I had reached a point at which I truly believed that I could no longer physically withstand the pain that I was in.

This led me to the emergency room and, even there, I saw people desperately trying to harm themselves by any means they could, being stopped only because they were restrained by hospital staff.

And this was not because they didn’t have “help” or “options.” It wasn’t even because they weren’t asking for support. They were in the hospital — they were surrounded by people who, in theory anyway, wanted to help them.

But their pain was that unbearable, that all-consuming.

How do you bring someone back from that? And more importantly, how do you make sure they don’t return to that place?

Beyond preventing the act of attempting suicide, I want to know how we can assure them that the life they’re returning to is one in which they are truly supported.

No one should ever get to a point of experiencing that much pain. And if they do, there should be no question of what resources are in place to guide them through recovery. But our system isn’t built to intervene sooner rather than later. Our system isn’t built to create a reliable, consistent safety net afterward.

It’s certainly not interested in establishing any real quality of life, so much as it focuses on simply preventing death.

We have a “worst case scenario” mental health system, and it’s failing. Its efficacy is a game of luck at best, a roll of the dice.

If you have insurance; access to transportation; the right combination of clinicians, inpatient or outpatient programs, and/or medications; the time to commit to recovery; the persistence to keep following up with providers; the support system around you to help you when this becomes overwhelming; and the sheer energy to navigate the system that is already overburdened — maybe, just maybe you’ll survive.

No one’s livelihood or quality of life should be left to chance.

I’m not trying to paint a bleak picture. People can and do thrive, and I’m absolutely an example of that.

But not because our system is actually successful at what it does — it’s because I am one of the lucky ones that eventually, after many years, found my way through it.

I can tell you why I attempted suicide years ago, and it’s simple: the amount of time it took to “recover” exceeded the amount of resources I had to cope.

It took eight years to get the proper diagnoses for my mental health conditions from the time I started therapy at age 17.

Which means it took eight years to find the right medications to treat my OCD, PTSD, and ADHD. And it took eight years to find a therapist that specialized in those areas — a therapist that I had to pay out-of-pocket for, because my insurance wasn’t taken by any therapists in the area who had openings for new clients.

I’m less interested in preventing the act of suicide itself, and more interested in knowing why our system is doing such a terrible job of caring for people who are struggling before, during, and after.

When we know earlier and more compassionate interventions are so critical, and when we know quality of life is exceedingly more important than simply keeping someone alive, we need to start asking why our system is set up the way it is.

We need to start demanding that something change — because our lives depend on it.

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Hey there, friend. Before you go, I want to share some resources with you.

selfcare

If you’re suicidal, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386, or reach the Crisis Text Line by texting “START” to 741741.

This isn’t just a generic “here are some numbers” plug, I promise. This is a “I want you to stay, we need you here, please don’t go just yet” plea.

Are you a loved one that wants to reach out to someone you think is struggling? Incredible. You totally should.

I have a guide here for how you can offer support in concrete ways.

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One more thing: I created this resource totally for free, but your donations help keep this labor of love going.

This blog is not sponsored by any fancy pants investors that are trying to sell you stuff.

It’s funded by readers like you via Patreon!

Every donation counts. Help keep resources like these accessible to everyone that needs them! And help buy me a cup of coffee, because I write a lot of these blogs after work, late at night, so I could definitely use the caffeine.

 

Some credits & gratitude go to… Photo by rawpixel on Unsplash. Artwork by Jessica Krcmarik.