My Least Favorite Obsession: Am I Making My Mental Illness Up?

I can remember the first time I realized something wasn’t right. I couldn’t have been any older than seven or eight. I couldn’t sleep, and I was panicking and seething with guilt, though I don’t remember why.

What I do remember is that I’d gotten into a habit of holding my breath and counting when I felt stressed like this. More specifically, I’d hold my breath and count to ten. Sometimes it would help for a moment, until the anxiety started to pummel me again, my thoughts racing like a runaway train.

I’d repeat the process, then, until I fell asleep or couldn’t hold my breath anymore.

1… 2… 3… 4… 5…

6… 7… 8… 9… 10.

(I always loved the number five and multiples of five.)

I remember how it struck me that, no matter how many sets of ten that I cycled through, it never seemed to truly help me. And I wondered why my efforts were failing. Take deep breaths, right? That’s what they said.

I didn’t understand my emotions, because my emotions didn’t behave the way I was told they would.

It wasn’t necessarily a surprise, then, when I was nine and planning the details of my funeral like I was assembling a grocery list (I distinctly remember wanting my stuffed animals to be in my casket, until I later thought it punishingly unfair to bury them with me, as I explained in my diary).

It wasn’t a surprise that when I was ten, I was so jarred by the attacks on 9/11 that I started reciting the pledge of allegiance every time it was 9:11 PM, just in case, to make sure that nothing bad would happen.

And it wasn’t a surprise, either, when I was thirteen and contemplating suicide. It wasn’t a surprise anymore, because I knew from a young age that my emotions had always had a mind of their own, one that I was helpless in the face of.

For as long as I could remember, my body — and my life, really — was just a vessel for some kind of unspeakable anxiety and, at times, depression. This has been a constant. And for something so constant, you’d think I would never question it.

But I’ve still spent the last month in a tailspin anyway, persistently worrying that I’ve invented all of this somehow.

Disbelief and invalidation were my first experiences when I shared my pain, and those first experiences have never left me. It’s a voice of doubt that I’ve internalized after years of practice, after plenty of time to rehearse and learn the role.

It was the well-meaning parent that said, “We all get sad sometimes.”

It was the so-called friend that said, “He’s just doing this for attention.”

It was the school counselor that looked at my self-inflicted wounds and said, “Oh, that’s not so bad.”

It was the uncaring psychiatrist that said, “If your grades are good, why are you here?”

It was the teacher that said, “You don’t seem depressed to me.”

That seed of doubt was planted long before I had any defenses against it.

When I first started sharing my pain, it was often followed by someone else’s doubts. Those doubts almost acted like an electric shock, training my brain to question myself whenever I was hurting. The outside world interrogated my reality often enough that I had eventually learned to do it myself.

My obsessive-compulsive disorder, of course, latched onto this persistent self-doubt like a parasite, thriving off of it.

I have OCD… or don’t I? What if it’s an excuse, a way to disguise my evil nature? What if it’s all fabricated? What if it’s a manipulative ploy, a way of harming the people I love by eliciting their concern? How would I know if I’m lying? What if it’s all unconscious? What if I don’t even realize it’s happening?

And then I’d desperately search for reassurance.

I’d repeatedly ask my friends and clinicians to tell me I wasn’t imagining it, I’d research my diagnoses to death, I’d take every quiz, I’d google every variation on “did I make up my mental illness.” And if you know a thing or two about OCD, you’d know that the compulsion to be reassured only makes the obsession worse.

I became obsessed with the idea that I might have some kind of factitious disorder, despite how little sense that really made.

This last week, I spent upwards of ten or more hours of my day, drowning in the fear that I could be unconsciously hurting other people, lying to them. That I was somehow dishonest. And because factitious disorders are largely unconscious, it would be impossible to prove the existence of something that, by nature, I wouldn’t be aware of.

In other words, it’s a total mindfuck.

I’ve often explained my OCD to people as being fixated on “the unicorn in the other room.” I can’t definitively prove there isn’t a unicorn in the other room, and the mountain of evidence to the contrary doesn’t offer total certainty. And for OCD, 99% certainty will never be enough; OCD thrives in the 1%.

OCD introduced an ethical dilemma that, at the time, felt very real to me: Every time I reached out for help, I questioned if it was an attempt to manipulate someone, or if it was “proof” that I only wanted attention.

The simple act of needing help became evidence of the very thing I feared most.

But the more I suffered, the more I desperately wanted to ask for help, fueling the anxiety. It got to the point where I was refusing to go to support groups, because I was afraid I would be “found out.”

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My journal is filled with messy charts like this.

That anxiety fed the compulsion to research (which is, in fact, a real compulsion), to repeatedly ask if friends believed I was ill or lying, or to ask my clinicians to remind me of my diagnoses (and some were totally unwilling to play this game, knowing it was a compulsion).

At one point, I was opening up my healthcare provider’s app dozens of times per day, just to look at my list of diagnoses in an attempt to self-soothe.

These mental compulsions, though subtle at first, started to escalate in frequency, until it eclipsed most, if not all of my day. I’m talking, thirty-texts-in-one-week-asking-my-friend-if-I-have-OCD kind of frequency (sorry about that, Chris). And the more I tried to stop thinking about it? The worse it got.

It took me far too long to recognize that these were behaviors stemming from OCD. Even now as I’m writing, there’s this compulsion to research just a little more, to take another OCD quiz (knowing that the results will always, always be the same), or to ask my partner for the millionth time, “Are you sure I have OCD?”

You know, just to be sure.

(And even now, there’s the fear that I’ll put this article out into the world, only to discover later that I’m not mentally ill at all. It’s not logical… but OCD isn’t logical, either.)

But given what I know about OCD, I’m probably not the only person that has been consumed by this fear.

And I’m definitely not the only mentally ill person to ever worry myself sick over whether or not I’m mentally ill enough, traumatized enough, suffering enough.

The very existence of this fear (which is so common, obviously to varying degrees) speaks to the kind of invalidating world we live in. Mentally ill people are practically groomed to gaslight themselves, and that kind of doubt doesn’t help or serve anyone.

So if you’re out there, maybe repeatedly googling “Am I making my mental illness up?” (like I have about five hundred times this week), I hope that this came up on your search results — and I’m glad that you’re here.

Because I’m going to say to you what I think is most important to hear right now:

No matter what you label your suffering, that pain is valid.

Mental illness or not, whatever framework you use to interpret or make sense of your pain… it’s still valid, and you deserve to be supported as you work through it.

If you are struggling, you deserve compassion and care. And as you struggle, you need to take care of yourself.

You have value. All people do. And you, just like anyone else, are worthy of happiness, health, and wholeness.

I’m giving you permission to create the circumstances needed for you to be well and thrive.

If that means asking for help, ask for help. No one should have to suffer alone, including you.

I can’t prove to myself that I do or don’t have OCD (or depression, C-PTSD, borderline, and whatever else ends up on my chart).

…And if you think about it, the nature of this whole “existence” thing is that there’s never complete certainty of anything — just hopefully enough certainty to get by.

My brain still isn’t satisfied with the quizzes, or the research, or the reminders from friends, or the diagnoses. I realize that now. The more I seek out the reassurance, the worse I feel.

And while I’m (mostly) okay right now, I might obsess about this all over again tomorrow, because that’s what this disorder does.

(Or maybe my mind will latch onto another fear, convincing me of some other way I might hurt someone or do something that I don’t actually want to do, inspiring the next great moral crisis for me to spend hours and hours consumed by. This is a very tedious, persistent disorder.)

So rather than resisting the doubt, I’m choosing to live with it. I’m choosing to do my very best to accept it — to accept doubt as one of the preconditions to being human in this very messy, confusing world.

I don’t know much for certain, but I do know this: I can take care of myself today. I can try my best to be kind to myself.

That’s what I’m going to do tonight. And I hope you will, too.

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How Many Mental Disorders Is Too Many?

How many is too many? This is what I asked myself when a psychiatrist – who I was seeing temporarily while my usual was on paternity leave – looked up from a stack of books and a database on his computer and said to me, “This is really complicated.”

When I asked him what he meant, he seemed a little worried when he said, “Your diagnoses and your medications are very… complex.”

I knew that. Every clinician that opened up my file knew that. Every pharmacist that ever filled my prescriptions. Every friend that finally realized how much energy goes into being a mostly-assembled Sam Dylan Finch.

With my bipolar diagnosis reinstated after a hypomanic episode triggered by Zoloft, it could now rejoin my growing list of neuroses: borderline personality disorder, obsessive compulsive disorder, agoraphobia, substance use disorder, and generalized anxiety and/or ADHD depending on which clinician you ask.

This doesn’t even capture the psychotic and dissociative features of a few of the illnesses I deal with.

Some people would call these “co-occurring diagnoses” on a good day but I would actually just call these a straight up clusterfuck.

People like to tell me that “it’s all just labels” and that the words are ultimately unimportant. But they weren’t there ten years ago,  when I was a teenager that fantasized about ending my life, tormented by obsessive thoughts and deep depression. Back then, the only thing I wanted was to understand what was wrong.

My psychiatric diagnoses have given me that understanding, and affirmed that it wasn’t just in my head, that it wasn’t made up, that I wasn’t alone.

People can tell me that my diagnoses are just words at the end of the day, but those words are important to me, and that’s what makes them important. And the impact of these disorders is something that I have to live with every minute of every day – so why wouldn’t it be critical to name something that’s so pervasive in my life?

(Honestly, when people tell me it’s just words, I laugh. If you woke up to the sound of a chainsaw every morning with no explanation, would you ignore it altogether in favor of just saying, “Well, it’s just noise”?)

But I would be lying if I said my psychiatric diagnoses always make me feel empowered. The truth is that while I am glad to have a name for a once invisible battle, I’m also afraid.

I’m very afraid. I’m afraid because, like many clinicians have told me, this is complicated. Complicated to understand. Complicated to treat. Complicated to manage. I’m afraid that maybe there’s such a thing as “too mentally ill” or “too many mental disorders,” and that there will never be a “normal” for me – that I’ll always be swimming upstream.

I’m afraid of being hospitalized again. I’m afraid of being hospitalized again and again, because statistically this is likely. I’m afraid of attempting suicide again. I’m afraid of attempting again and again, because this, too, is possible and maybe even likely.

People often tell me that I’m not a statistic. I know this is true. But we can’t also pretend that statistics have no bearing on what my future might look like. I can’t ignore the fact that I am vulnerable. And I go to bed every night knowing this – knowing that I have a lot of good reasons to feel unsafe, even on my best day.

The more diagnoses I’m given, the more overwhelmed I feel.

I am mistrustful and fearful of my own mind – how it seems to always be working against me, how even my best efforts are sometimes not enough to stay in control. I never seem to know what’s real and what’s part of an illness.

I don’t know where each illness stops and I begin. I’ve spent a lot of the last two months confused, feeling claustrophobic in my own head, like I need to get out of here because there’s no room for me, like the wind is constantly being knocked out of me.

In conversations about mental health, we often talk about people who have one or two disorders. And I’m usually somewhere on the sidelines, wishing people like me were more visible – people who have so many diagnoses, they sometimes lose track of themselves, sometimes lose themselves to the fear of what they’ve become and could become.

I am an optimistic and determined person on the whole, and I still lose myself to that fear from time to time. When my psychiatrist quietly acknowledged the complexity of my trauma, I wondered if it’s possible to be so mentally ill that you become impossible to care for, impossible to help, impossible to love.

I spend a lot of time worrying that I can’t be loved.

In a society that tells us we’re broken if we have one mental illness, what happens when you have six?

Can you ever really be honest about who you are and what you’re going through without seeming too crazy? Too hopeless? Too much? This is the perpetual question for me, as someone who is both a person offline (go figure) but also an activist and writer online, who wants to create the space for people to be authentically themselves, but has to navigate the same stigma, too.

I think with all of the fear that I’m experiencing lately, I’ve finally gotten to a point where I’m tired of being isolated like this. I want to create a space for all of us to own how terrifying it is to be told we’re “complicated.”

Being complicated sucks. Being complicated hurts.

I remember that when I was initially diagnosed with just depression as a teenager, I was told by clinicians that my depression was very treatable, always emphasizing a positive prognosis and long term goals.

At this point in my life, when I meet clinicians, we only ever talk about today – we never talk about the future in any capacity. I think because neither of us knows what to say.

And that’s what my psychiatric journey has looked like: a lot of subtle ways in which it was communicated to me, with each new doctor and each new name, that being “complex” means difficulty – difficulty treating, much less supporting or affirming.

But I’m tired of apologizing to clinicians, to friends, and even to readers for being messy. For having more issues than National Geographic. For giving “certifiably insane” a whole new spokesperson. And I know so many mentally ill people with countless diagnoses who are equally exhausted, trying to package things in a more presentable way so people will accept them.

Sometimes people have three, four, five, six, seven, eight, you-name-it diagnoses and if we aren’t making room for those people to show up authentically, we are failing the mental health community as a whole.

This work isn’t about making spaces for some of us. It’s about making room for all of us.

Having co-occurring diagnoses is a scary place to be. Sometimes it’s a hopeless place to be, especially when your clinicians seem a little defeated themselves and the people in your life don’t know how to help you.

Sometimes (often) people don’t even believe me. Sometimes they see it as a chance to write me off as beyond repair. Sometimes my mental illnesses go from being a concern to being a joke. Sometimes I’m dehumanized and pathologized to the point where I’m seen exclusively as a case study. In my life, I’m consistently reminded of how people have no idea how to treat other people with co-occurring diagnoses, especially as they increase in number.

If we can’t create support for folks like me, where else are they going to go? When else can they be themselves?

Psychiatric labels can be important to us, scary to us, even empowering to us – for me, it’s been all three. But one thing they’ll never be is the sole determiner of our worth. We are whole people with value, no matter how few or how many diagnoses we have.

That’s the truth. And it’s a truth we need to make sure everyone – especially mentally ill folks – know.

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Mental Illness Has Impacted My Transgender Identity

Once upon a time, I wrote an article about how I wasn’t completely happy with my hormonal transition. Unsurprisingly, I got a lot of shit for it – because dog forbid I have complicated feelings about my body completely changing.

One commenter, I guess in an attempt to insult me, told me to get a therapist and that I was INSANE (emphasis theirs). What they didn’t realize was that they were correct about one thing – my feelings about my transition were absolutely informed by mental illness.

Frankly, I’m annoyed with neurotypical trans people judging my experience of transition – because comparing our experiences completely ignores the reality that I struggle in a way they never will.

What I didn’t mention in that article is that I was diagnosed with OCD after a spiral of obsession that all but drove me to the edge. And what was I obsessing about? My gender identity.

Some folks with OCD – particularly those with the pure obsessional form – find themselves obsessing about sexual orientation or gender identity. Imagine a straight person completely tormented by the idea of being gay (or a gay person obsessed with being straight), or a transgender person, like me, spending hours and hours in a panic, obsessed with the idea of being cisgender (and, yes, vice versa).

The thing about these obsessions is that there’s no concrete evidence that the obsession is grounded in reality.

I’d identified as transgender for four years, and up until the obsession started, felt secure and happy in my identity. I didn’t want to detransition – the thought of doing so horrified me. I was unbelievably opposed to living as a cis woman, which had never felt right in the first place. And my dysphoria was improving slowly but surely with my transition.

The obsession didn’t make any sense. It was just a track on loop that said, “What if, what if, what if?” But it felt like I couldn’t stop thinking about it, no matter what I did.

My therapist said that the obsession was triggered when I was supporting a friend through detransition (which I was happy to do – I love this person, and I support folks making whatever decisions they need to, including detransition!).

The fear that I might experience the despair that they were experiencing had set off an obsession – and it’s an obsession I still battle with months and months later.

When the obsession started, I was initially afraid to disclose to anyone that it was happening. I was afraid that they would invalidate my transgender identity, question the sincerity of my gender, or ostracize me from the community.

And I felt like I couldn’t tell clinicians, because I was afraid they would impede my access to top surgery, which I badly needed.

But imagine my relief when my therapist, who specialized in caring for the transgender population, recognized that my OCD was impacting my transition. I was able to access medication to help manage it – and from there, I connected with another transgender person with OCD, who had endured the same kind of obsessive spiral that I had.

Nowadays, the obsession comes and goes, and I feel more secure knowing that it isn’t a reflection of my identity but rather, an aspect of a disorder.

To be honest, when people commented on that previous article, telling me that I was less of a trans person because I had mixed feelings about my hormonal transition, I was angry. Angry because they had no idea the kind of hell that OCD put me through, making me irrationally obsess about the most fundamental part of who I am for nearly every waking hour of my day.

Lucky you, I wanted to say, that you’ve had nothing but positive transition experiences. Good for you?

The reality is that mentally ill trans people like me have a distinctly different experience of transition.

I’ve talked to trans people with generalized anxiety, who overthink and worry about every aspect of their transitions. I’ve talked to (and personally experienced) the detached, unstable sense of identity that trans people with borderline have coped with. I’ve talked to trans people with depression who, in the midst of an episode, felt too empty to connect with their transness. I’ve talked to mentally ill trans people who have had their gender identities completely written off as a delusion.

And I’ve written about survivors of trauma and mental illness who don’t even realize they are transgender until much later in life, because survival was their first priority – and because trauma can delay many aspects of self-actualization.

To be clear, being transgender is not a mental illness. But I absolutely believe that mental illness can impact our experiences of being transgender.

When neurotypical transgender people judge my experience of transition, I can only roll my eyes. What a privilege, to not live through the complexities, the complications, and the anguish of trying to manifest your truth through the trauma of mental illness, not to mention the actual barriers that prevent us from accessing care.

If we are acknowledging that things like race, class, and gender impact the oppression that transgender people have been dealt, I’m asking that neurotypical transgender people recognize that perhaps their experiences are different from mentally ill trans people – and that mental illness does not invalidate our identities, or make us less valid as transgender people.

I’m just going to say it, straight up: I think it’s ableist and fucked up to tell mentally ill transgender people like me that if they aren’t happy about transition or secure in themselves, they aren’t transgender at all.

I believe that we need to hold space for mentally ill trans people to navigate their identities. To stop saying that questioning, doubting, or fearing their transness makes them inherently less than – because that experience is not only normal for any and all trans people, but especially real for many trans people with mental illness.

We need to make room for mentally ill trans people (and really, all trans people) to be stressed about transition, fed up with transition, exhausted by transition – because we don’t always have the capacity to deal with these kinds of changes when we’re just trying to survive.

We also need to recognize that mentally ill trans people are some of the most vulnerable in our community, because struggling with any kind of dysphoria (emotional, social, physical), transphobia, or erasure only jeopardizes our health even further, endangering us.

And we absolutely need to acknowledge that there are mentally ill trans people who can’t transition or don’t want to – full stop.

So yes, irritating commenter, I’m insane. Har har, you got me. Mental illness has undoubtedly shaped my sense of self and my experience of transition, as it has for many trans people.

Chances are, with the prevalence of mental health struggles in our community, if you aren’t struggling with mental illness yourself, you know and love a trans person who is.

But if we continue to marginalize mentally ill trans people, I’d venture to say that we aren’t much better than the cisgender people who marginalize us.

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Not Otherwise Specified: The Pain Of Hearing ‘I Don’t Know’

For the last six years, I’ve held on tight to my bipolar diagnosis – it kept me afloat in the midst of very turbulent seas. It was a framework that helped me understand my thoughts, feelings, and behaviors; it was a word that helped me find a community of people who were similarly struggling.

I remember listening to Mary Lambert’s song “Secrets” for the first time, with its opening line, “I’ve got bipolar disorder / my shit’s not in order,” and feeling the immediate connection and kinship that only comes from two people with the same endless, chaotic battle.

I felt like that song was for me.

I felt seen in that moment. I felt seen in every moment when someone I knew or someone with visibility came out and said that magic word: Bipolar, bipolar, bipolar, making me feel more and more real every time they stepped out of the shadows.

“Bipolar,” as a label, made me feel safe – like there was sense in the senseless, an anchor in an uncertain storm.

And that’s why, after a painfully long and involved evaluation, it was difficult to hear a psychiatrist say to me, “I don’t know if you have bipolar disorder.”

Mood Disorder Not Otherwise Specified, they told me, otherwise known as the grey area between depression and bipolar. Because they couldn’t just let me have depression, either – they left it ambiguous, leaving me straddling two words and two communities and two answers, pulling the ground out from underneath me.

In so many ways, this label was hollow. It was a question more than it was a statement. I couldn’t turn to the world and say, “This is what I’m going through” or “this is how much it hurts.” There’s no measure of severity, or list of symptoms, or a simple story to tell the world, tell my parents, tell my partner what’s happening to me.

Not Otherwise Specified is an empty place that tries to hold the entirety of your struggle, tries to say everything there is to say, without really holding or saying anything at all.

As if to say, “Your mind is out of bounds and we are out of words.”

My suffering has colored outside the lines like a child with no sense of where it all starts and stops.

I have no sense of where it all starts and stops.

In addition to my Mood Disorder Not Otherwise Specified, they have other things to specify: Obsessive Compulsive Disorder (OCD), which I should’ve suspected but never knew, and Borderline Personality Disorder, which they suspect is the root of my misdiagnosis.

It all feels true enough, but it also feels too new.

This, in addition to my agoraphobia, in addition to my alcohol use disorder, which both come with their own pain, a pain that I sometimes feel all over my body instead of just in my mind.

What happened to me?

There are so many names for my trauma, and so many names still missing, some more precise than others.

Just like that, I was OCD, I was borderline – two things I’d both always been and never been before – and bipolar, the very center of it all, slipped from my grasp and became an unknown, as if it were never here.

And maybe it wasn’t.

People say that we invest too much in labels, that we aren’t our diagnoses. I can’t say for sure that they’re right or wrong.

But I suspect they don’t know the loneliness of suffering something nameless. I suspect they don’t know the confusion of lacking the words to convey your pain. And I suspect they don’t know the relief when the words lead you to someone else who knows that pain, too.

When I lost “bipolar,” I lost more than just a label – I lost the story that helped me make sense of it all, the words to describe my pain, and the connection to other people who understood both.

Not Otherwise Specified is not a story, not an answer, not a connection. It’s a placeholder, a seat saved for something or someone that hasn’t yet arrived.

And what am I supposed to do with that?

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